Hi, I’ve posted before about issues I’ve had with what appears to be an under active thyroid...so now I’ve got blood results (which might as well be in Spanish!) so I’m hoping that someone here might be able to put them into simple English.
In April last year I had a blood test that showed:
Thyroid peroxidase antibody level - 484.4 u/mL
Erythrocyte Sedimentation rate - 13 mm/h
A blood test in July last year showed:
Saturation iron binding capac - 12%
August blood test showed:
Serum TSH Level - 6.1
Serum free T4 level - 14.5
From September onwards I’ve been on Levothyroxine 25mcg which took a while to have any effect but then only worked for about 4 weeks! I’ve asked for an increase but this has been refused point blank because a repeat TSH test showed I was within normal parameters (although I don’t have the exact results just yet).
A blood test in October showed:
Serum C reactive protein level - 7mg/L
This week I’ve had an ultrasound scan on my neck which has shown my thyroid to be smaller than expected...not large.
Someone somewhere is clearly missing something but I’m not sure what.
If anyone can help with this I will be grateful.
Thanks
Written by
markwsteele
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Well, it looks like you have Hashi's, but difficult to tell because you haven't put any ranges - we always need the ranges.
You also have an ignorant doctor. It's not just being 'in-range' that counts, but where in the range the result falls. Was the TSH of 6.1 before you started the 25 mcg? Or after? Your doctor is wrong to go by the TSH, anyway.
Ranges?? I’ve no idea what that means...the other figures given for TSH 6.1 was 0.27-4.20....is this what you mean? And yes 6.1 was before I started Levothyroxine
Well, there are a lot of tests that I don't know anything about, there, but you have Hashi's, and you are hypo. I presume that FT4 was low in-range. No FT3?
As SlowDragon says, the aim of thyroid hormone replacement (levo) is to bring your TSH down to 1 or under, and once it gets to that point, it doesn't have much use for dosing purposes. But, it's hardly unlikely that 25 mcg is going to do that for you. It's only half a starter dose. Four to six weeks after starting the 25 mcg, your doctor should have retested you and increased your dose by 25 mcg. That he refuses to increase shows that he know nothing about thyroid.
The 'good' news is, that with Hashi's, on only 25 mcg levo, your TSH is bound to go up above range sooner or later. However, you really do need a new doctor who knows something about thyroid, or you're going to have this battle continually and never manage to get well. He just doesn't know what he's doing.
You also have high levels of inflammation, according to the CRP test, but that's to be expected with Hashi's. It should decrease as your hormone levels rise.
As SlowDragon also says, you absolutely need your nutrient levels tested.
Hi, well today I’ve been back to my gp and have discussed my ultrasound scan which showed my thyroid had reduced in size...and we discussed the blood results I’d had last time. Despite me quoting what I’d read and learnt about the Levothyroxine doses my gp is unwilling to increase me to 50mcg in case that turns me from hypo thyroid to hyper thyroid. The fact that my last blood test in December showed my TSH had dropped from 6.1 to 4.2 despite the fact the test was skewed by the fact my blood was tested late in the day (and not first thing before taking my levo) seemed to make no difference.
So tomorrow morning (first thing) I’m having a full set of tests done, well everything except the free T3 as they don’t do it...but everything else that was suggested, and I’ll get my results Friday afternoon.
I’m going to push to get my Levothyroxine increased to 50mcg, being on half the starter dose seems pointless.
Thanks for your help so far, if you have any other suggestions they will be gratefully received.
Your doctor really doesn't know much about it, does he. It is impossible for a hypo to become hyper, physically impossible. The thyroid cannot suddenly repair itself and start producing excess hormone. And, even if it could, taking levo wouldn't make it happen. Levo is thyroid hormone replacement. It doesn't repair or stimulate anything. Just replaces the hormone your thyroid can no-longer make itself.
He is confusing 'going hyper' with becoming 'over-medicated'. But that is absolutely not going to happen just with an increase to 50 mcg. And, even if it did, he wouldn't know about it just by testing the TSH. He would have to see the FT3 to know if you're over-medicated. And, if he doesn't even test the FT3, he's not going to know.
This man is dangerously ignorant. He is going to keep you sick. Your really need to see someone else that has at least half a clue!
Thanks for the reply. I agree that this doctor doesn’t know an awful lot...but thanks to the advice from yourself and others I’m at least going in there knowing more myself...which means I’m pushing in the right direction!!
Calcium is below range, this is very often due to low vitamin D
politely Insist on testing vitamin D, folate, B12 and ferritin
Plus coeliac blood test too
Or test privately
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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
Hi, well today I’ve been back to my gp and have discussed my ultrasound scan which showed my thyroid had reduced in size...and we discussed the blood results I’d had last time. Despite me quoting what I’d read and learnt about the Levothyroxine doses my gp is unwilling to increase me to 50mcg in case that turns me from hypo thyroid to hyper thyroid. The fact that my last blood test in December showed my TSH had dropped from 6.1 to 4.2 despite the fact the test was skewed by the fact my blood was tested late in the day (and not first thing before taking my levo) seemed to make no difference.
So tomorrow morning (first thing) I’m having a full set of tests done, well everything except the free T3 as they don’t do it...but everything else that was suggested, and I’ll get my results Friday afternoon.
I’m going to push to get my Levothyroxine increased to 50mcg, being on half the starter dose seems pointless.
Thanks for your help so far, if you have any other suggestions they will be gratefully received.
A TSH of 4.2 was far, far too high for anyone on Levothyroxine
Dose should have been increased immediately by 25mcg and retested 6-8 weeks later
Your GP is completely unaware of how to treat a Thyroid patient
Come back with new post once you get results and ranges
TSH should be under 2 (often we need it lower than that with Hashimoto's)
Once you have had coeliac blood test, assuming result is negative, you can consider trying strictly gluten free for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
If coeliac test is positive, you have to remain on high gluten diet until endoscopy. Should be max wait of 6 weeks
NICE guidelines saying how to initiate Levothyroxine and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
On Levothyroxine the aim is to increase dose slowly in 25mcg steps until TSH is between 0.4-1.5
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just 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)."
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
Brilliant thank you. I’m taking as much ownership of this illness as I can, having worked for the NHS in the past for more years than I care to remember I’m very aware of how good and bad it can be.
First step is to get your actual results and ranges and see exactly what has been tested
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Come back with new post once you get results and ranges
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 your Thyroid antibodies are raised
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
See a different doctor
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when on just Levothyroxine to be adequately treated
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