A few days ago I wrote to my GP asking for the recommended list (from here) of thyroid tests for my follow up blood test due today. I asked the nurse (and looked) what he was testing me for.....and there they all were....the whole lot!
She said he's a very thorough doctor; adding they like patients who take an active interest in their health.
I'll post my results very soon.....
Thanks for all the help and knowledge this website is giving me.
Fingers crossed that the lab agrees to do them all 🤞
Oh I never thought of that one....
Hi seasidesusie ❤️
Just had this very thing at Hexham hospital in Dec 21 when having PTH, calcium, vit D done.. The labs omitted the vit D and calcium as I'd had them done in sep 21..not knowing this test was a diagnostic test for primary hyperparathiyroidism 🤦♀️ anyway I contacted the endo who I my say accepted these results as ok😠😠.. And challenged him on that finding he had no choice but to bk down admitting the labs had omitted the calcium and vit D, I then asked him why he had not made it clear on the blood test it was for diagnosis of primary hyperparathiyroidism?.. This would have avoided the mistake he had no answer for that so I told him to re arrange the these to be performed again, ho he was not a happy boy in that I was demanding something from him, he ranted on about further testing not being conclusive to which I ignored and just requested he sent the relevant paperwork to my gp to which he refused, he did however say if I came across a problem in getting the para tests my surgery could contact him, 🤦♀️.. So off I trot to have a 3 round of para bloods done on the nhs.. Wonder how much that cost the tax payer.. 🤦♀️🤷♀️🤷♀️
I’m so glad that you’ve got a GP willing to investigate your condition & recommend tests!
Well done....hope it all goes to plan!
Hi janet65❤️
I NOW always ask what blood tests my gp is performing as I've been let down so much by my surgery since my thyroidectomy in 2019..and ALWAYS ask for printouts of my blood results eventho I get rolling eyes by the receptionists ( like it's more than their jobs worth to do them) I don't give a dam we need to look after our own health and advocate for our wellbeing because I have found certain endos and doctors just won't.. 👍🌹🌹
Hi Birkie,Yes I've always phoned to ask for a copy of my results to be emailed to me. Thankfully I've never had any problems, although they mostly run it past the GP first.
They've just started putting my results on Patients Know Best.
So I had the blood test yesterday at 9am.
By the afternoon I had the results of TSH, FT4, FT3, ferritin, folate, B12. I did ask for VitD but it was actually done at the end of Dec so that wasn't done. The antibody ones aren't back yet - hope they'll be on their way.
Also the results aren't showing any figures or ranges....so guess I'll be asking for an email which will show the missing info.
OK....looked at results on my phone and found out how to see the actual results and ranges.....
TSH - 1.53 (0.27-4.2)
Two things here, I've never seen a range (starting at 0.27) like that before! Secondly, how quickly that went down from 6.97 by changing brands! Also I was on 50/75 alternate days.
T4 -16 (11 - 22)
T3 - 3.5 (3.1 - 6.8)
Ferritin - 41 (13 -150)
Folate - 16 (2.4 - 17.5)
B12 - 518 (197 - 771)
*Vit D - 107 (75 - 200) Optimal - tested Dec 24th 2021.
IMO, I need more Levo but possibly introduced slowly....
The Ferritin concerns me too. The last time I saw any test for that it was 47 and I was taken off iron tablets. That was mostly because the hemoglobin was 135....it's now 133 but even so looking at the range (13 -150) that's pretty pathetic.
I should add that two years ago I'd had colon cancer and got very anemic, had an op and was built up again with iron tablets.
Tomorrow I'll discuss with my GP but would be grateful of your input so I know what I'm asking for.
Thanks
janet65
TSH - 1.53 (0.27-4.2)
Two things here, I've never seen a range (starting at 0.27) like that before!
It's a very common range, it's used by all the popular private testing companies that members here use (Blue Horizon, Medichecks, Monitor My Health, Thriva). My GP surgery uses the range 0.35-5.5
T4 -16 (11 - 22)
T3 - 3.5 (3.1 - 6.8)
Did you take your last dose of Levo 24 hours before the test? If so then you have an accurate measure of your normal circulating hormone.
Your FT4 is 45.45% through range and your FT3 is 10.81% through range.
Calculator here: thyroid.dopiaza.org/
IMO, I need more Levo but possibly introduced slowly....
Agreed, you definitely need an increase in your Levo. Most people on Levo only seem to feel better when TSH is 1 or below with FT4 and FT3 in the upper part of their reference ranges and fairly well balanced. So you have plenty of room to increase that FT4 level, you also need to see if your FT3 level increases because at the moment your conversion of T4 to T3 looks poor.
Ferritin - 41 (13 -150)
The Ferritin concerns me too. The last time I saw any test for that it was 47 and I was taken off iron tablets. That was mostly because the hemoglobin was 135....it's now 133 but even so looking at the range (13 -150) that's pretty pathetic.
Yes, your ferritin is too low. Some experts say that the optimal ferritin level for thyroid function is 90-110ug/L and we always say here it is recommended to be half way through range so with a range of 13-150 you're looking at around 82.
When your ferritin was 47 and you were taken off iron tablets, was a full iron panel done to check your serum iron and saturation? If not it should have been. If these were low then you should have continued with your iron tablets. If they were at good levels then you should have been advised to try and raise your ferritin level through diet.
I don't quite see what the haemoglobin had to do with it if the range is the same as mine - 115-165 - so there's quite a bit of leeway there and a level of 135 shouldn't cause any panic.
Folate - 16 (2.4 - 17.5)
Do you supplement with a B Complex or folate supplement?
B12 - 518 (197 - 771)
Is this pmol/L or ng/L (or pg/ml which is the same as ng/L)
*Vit D - 107 (75 - 200) Optimal - tested Dec 24th 2021.
The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health recommending at least 125nmol/L.
Thanks for your reply. Yes on checking I can see the TSH range does start at that....
Yes I'm always careful to do the required 24hrs since last Levo.
April 2020, I was under a locum GP with my colon cancer and he did the last full iron panel test. I stayed on the iron tablets for a long time. I think this GP only did a Ferritin check as I remember seeing the number - 47 but can't find the paper. That's when I stopped the iron tablets.
B12 is ng/L
No I don't take any B Complex or folate supplements.
I take VitD3 4000iu a day.
janet65
B12 is ng/L
OK, so we have 518ng/L. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
So it's on the low side and if this was my result I'd want to get my B12 higher.
Foods containing B12 include
Liver and kidneys (liver will also help raise your ferritin level, but no more than 200g per week due to high Vit A content)
Sardines, salmon and Tuna
Beef
Dairy products and eggs
You could supplement with a B Complex (but not B12 alone, it needs a B Complex as well to keep all the B vitamins in balance), but as your folate level is already close to the top of the range you'd be looking at one with a low folate level. It wouldn't hurt for your folate to increase as excess B vitamins are excreted so you may just want to look for a goo quality, bioavailable B Complex containing methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid).
I take VitD3 4000iu a day.
We should test twice a year when supplementing and for most of us this means private testing. Cheapest is vitamindtest.org.uk/ which is an NHS lab which offers a dried blood spot fingerprick test to the general public for £29.
You may be able to make Vit D from the sun during the summer months and that would mean you could reduce or even stop your supplements for those months, but not all of us do and need to supplement all year round.
Do you also take D3's important cofactors - magnesium (helps the body convert D3 into it's usable form) and Vit K2-MK7 (D3 aids absorption of calcium from food and K2-MK7 directs calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems like calcification of arterties and kidney stones, etc.)
Raising your ferritin level might help conversion of T4 to T3, if not then you might benefit from the addition of T3 to your Levo, but it would be best to increase Levo first to get FT4 up to about 75% through range then see where your FT3 lies.
Thanks for so much info....B12....yes I can see the reasoning for that. I've never had that tested before.
I have a lot of real dislikes for food. For many years I was a vegetarian and because a nutritionist found I was zinc deficient. I tried to take a zinc supplements but they gave me stomach pains so I was advised to start eating 'some' meat again.
Sirloin steak (once a month?) lamb, chicken and turkey. I'm afraid that's about it. Cod, haddock, canned tuna & canned salmon.
I've had issues with dairy since I was 24. I can't tolerate soya yogurt but have soya milk on my cereal.
I'll have to research for a good B complex....is there a recommended dose?
I recently had a Dexa scan and they asked for a bone profile....that was marked as normal.
I don't think I've ever tried a magnesium supplement.
Just saw the TPO results arrive in my inbox....GP will look at them before I can see any info....the line up the page looks high?
Does this look like the right info for TPO results please? I'm speaking to GP this morning, receptionist has looked at my results and assured me everything is 'normal'....
Thanks.
only if that is from the same hospital lab that did your TPOab test. You really need to see the actual result and range that came with it to be sure what range was actually used for your test.
Re. your latest TSH result .. it is surprising it fell so fast when you didn't increase dose and only changed brand .... so i expect GP would want to wait a while longer and retest TSH /fT4 before even considering increasing your Levo dose .....to see if TSH stabilises at this level or does something else unexpected on stable dose/ brand.
I was taking 50/75 alternative days. But suspect the Teva brand wasn't controlling anything? Thanks.
You results show you are under medicated, hardly surprising as 50mcg is only a starter dose
How long have you been on 50/75mcg alternate days
Which brand of levothyroxine are you now sticking with
Teva brand upsets many, many people
Teva is the only brand that makes 75mcg tablets
But if you are dairy/lactose intolerant you will need lactose free levothyroxine
Tablets that’s either Teva or Aristo
Aristo are only available in 100mcg tablets
You may need to be prescribed liquid levothyroxine if Teva or Aristo don’t agree with you
If you want to try Aristo Ask GP for prescription for 100mcg tablets and to specify Aristo lactose free levothyroxine and cut in half to get 50mcg
You likely need to go to 75mcg per day and retest in 6-8 weeks
If you need liquid levothyroxine and/or dose increase then will need to see thyroid specialist endocrinologist
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
tukadmin@thyroiduk.org
All soya best avoided when taking levothyroxine
Perhaps try different milk alternatives
Hi Slow Dragon,I can't remember when I changed from 75mg to 50/75 but I changed back to 75mg 8 weeks ago.
I'm on Mercury Pharma now.
Thanks.
End of story for now....GP adamant everything is in range and he's not changing Levo. Everything is 'adequate' and to be honest, today, I've run out of steam to challenge him over anything....
Thanks everyone....
🙂
Work on improving low ferritin
And retest thyroid again in 2-3 months
ALWAYS test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/files/docs/...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
BMJ also clear on dose required
Yes I shall try and increase the low ferritin. I'll maybe do a private test in 2-3 months..... I think the GP feels he's done his bit now!
I gave him a long list of health issues but he didn't attribute those to thyroid.
One of my main issues is sweating so he mentioned using Paroxetine. He said women have had good success with that.
Thanks.
Poor temperature control is common hypothyroid symptom
Is sweating any time, or mainly at night
Night sweats, suggest B12 issues
What vitamin supplements are you currently taking
That's what I was telling him but to no avail. I said I'm too old for menopausal hot flushes!! Sweating can be anytime. I read through your bio this morning and how useful. I've ordered and will try a B complex and magnesium, one of the brands you spoke about.
At the moment I take: Omega 3, Vit E, VitD3. I stopped the multivit when I checked and saw it contained iodine.
Yes multivitamins never recommended on here
A good quality daily vitamin B complex, but remember to stop taking this a week before blood test
Personally I then take a separate folate supplement and separate B12 during that week
Important to test vitamin D twice year when supplementing
Low iron/ferritin…..
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
An article that explains why Low ferritin and low thyroid levels are often linked
preventmiscarriage.com/iron...
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Medichecks iron panel test
medichecks.com/products/iro...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Good explanations of iron
theironclinic.com/iron-defi...
theironclinic.com/ironc/wp/...
Couldn’t see your actual thyroid antibodies test results
Important, if TPO antibodies are negative to also test TG antibodies. Would need to be private test as NHS only tests TG antibodies if TPO antibodies are high
Significant minority of Hashimoto’s patients only have high TG antibodies and struggle to get diagnosed
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s.
Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet
Gluten intolerance and dairy intolerance often go together. In fact dairy intolerance often improves after year or so on gluten free diet
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
20% of Hashimoto's patients never have raised antibodies
If both antibodies are negative….worth considering ultrasound scan £100 approx if GP won’t agree
healthunlocked.com/thyroidu...
Paul Robson on atrophied thyroid - especially if no TPO antibodies
paulrobinsonthyroid.com/cou...
Thanks Slow Dragon for all the links.
Finally can see my TPO antibody results today.
<7 IU/ml (<34 IU/ml)
Think that makes me negative.
yes , it 's 'very' negative. The test they used can't measure small amounts below 7 accurately , above 7 they can measure , and above 34 is positive. Yours are currently 'somewhere below 7'
However that doesn't prove the cause for your hypothyroidism is not autoimmune.. In autoimmune thyroid disease( Hashimoto's / Ord's) the level of antibodies probably goes down over many years~ as more of the thyroid is attacked there is less healthy thyroid left attack , and Thyroid peroxidase antibodies are what show up in the blood as the result of an attack.
Thyroid peroxidase which should be in the thyroid ends up somewhere else and so thyroid peroxidase antibodies fasten onto it as markers , to say 'clean this spilled thyroid peroxidase up , it shouldn't be here.' (might not be a 100% accurate description , but you get the gist ...)
You've been hypo since 1997 ish ,, so your TPOab may have been over range in the past, but are not anymore.
Also some people who have autoimmune thyroid damage diagnosed on thyroid scan , don't ever seem to have raised TPOab .
some just have TGab , (Thyroglobulin antibodies) , and some have neither, ( or at least they were never caught as positive when tested )
NHS won't usually Test TGab.. so if you are in that camp you won't know unless you DIY.
In a way , it doesn't really matter knowing why you went hypo , they are already treating you anyway , and 'autoimmune cause' doesn't change the treatment offered.
I had very high TPOab > 3000 in 2003 , but 15 yrs later they were only 195, and it wouldn't surprise me if they are a less than that now , but because nobody tests them very often we don't have much research to learn from. So whether my TPOab will ever go so low as to be 'negative ' i don't know.
Thanks Tattybogle ,That is truly good news as I have too many rogue antibodies roaming around!!
I was very fortunate living in Spain as they do an ultrasound scan on the thyroid every two years. My last one was 2012 and I was told I had very little thyroid left. This was dismissed by the GP here (the 'over my dead body one') and assured me I wouldn't get any on the NHS!! What a case 🙄
Electric shocks when hypo
Electric shocks and cramp...and moon face !
wow shock horror endo visit
I’m shocked!
Big shock regarding my congenital hypothyroidism!
