Been having hypo symptoms for several years now (basal temperature 35.3, cold hands, heartrate as low as 42 bpm when resting, constipation, outer third of eyebrows missing, vertical ridges on fingernails, tired, irritable etc). Over the past 10 years or so I’ve had various blood tests which included thyroid function but they’ve always included free T4 as well as TSH. This time (different GP) they have only requested TSH and nothing else. Should I insist on FT4 (and antibodies?) as well? TSH has come back in the normal range but wondering if there is something going on with the pituitary gland so presumably T4 levels would be useful?
Should I go back to GP and insist on FT4 tests or just take a private test?
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Edso57
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Looking at your profile, you say pernicious anaemia ?
Do you have confirmed PA or just low B12
PA is autoimmune, so makes autoimmune thyroid disease also called Hashimoto’s, more likely
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
What vitamin supplements are you currently taking,
Presumably you have B12 injections?
How frequently
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
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
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 all relevant vitamins
I had meant to reply to your post in more detail but family commitments (and energy levels) have delayed this until now!
I've never been diagnosed with PA (although my late father had it) but when first tested for B12 with GP and a follow up with Blue Horizon Medicals, my levels were at 253 and 224 (the Blue Horizon results suggested "Insufficient" between 140 - 250). Queried these results with GP who prescribed me with 50 mcg of cyanocobalamin tablets which were about as much use as smarties!. After doing my own research I sourced some Jarrow Formula Methyl B12 5000 mcg sub-lingual tablets which i have now reduced to 2500 mcg daily. I also take a good quality B complex tablet daily (with Methyl Folate). All the symptoms I'd been having when my B12 levels were low have largely disappeared! I also supplement daily in the winter (and since Covid) with 4000 IU Vitamin D and take vitamin K2 (to divert any excess calcium to bones not bloodstream)
Coming back to my thyroid tests, the TSH was 1.5 mu/L (range 0.27 - 4.2).
Before i went for my blood draw, GP told me that it wasn't necessary to do a FT4 test as this would only be required if the TSH levels came back high – ditto antibodies. Looking back on my medical records over the past 10 years I can see that my thyroid levels were checked in 2011, 2012, 2016 and 2017 and each time Free T4 was always measured. My GP also told me when I asked him that it was not necessary for fasting / early morning appointment before the blood draw? I also didn’t know about not taking the B complex tablets for 7 days due to Biotin issues …..
Surprised about the lack of FT4 testing, as my understanding is that if it were a pituitary gland problem / central hypothyroidism, the tests could show a normal TSH even though I have many (over a dozen) of the classic hypothyroidism symptoms, but surely FT4 would be needed too in this case?
I think private testing might be the answer as you suggest!!.
Hence over 121,000 members on here, vast majority are U.K. based and thousands upon thousands members forced to test privately to make progress and monitor levels
Only do private test early Monday or Tuesday morning and then post back via tracked postal service
Probably best to wait until New Year now
Important to stop vitamin B complex a week before test, you could take separate folate during that week
Important to test vitamin D twice year when supplementing, certainly initially to work out how much vitamin D you need to maintain optimal vitamin D levels.
Should I insist on FT4 (and antibodies?) as well? TSH has come back in the normal range but wondering if there is something going on with the pituitary gland so presumably T4 levels would be useful?
Insisting on anything gets their backs up right away, so a polite request and listing your symptoms to explain why fuller testing would be useful would go down better. You could ask but sometimes even if the GP requests it the lab doesn't do the other tests if TSH is in range, stupid I know and it misses cases of Central Hypothyroidism and developing autoimmune thyroid disease, but that's the way it is.
If your request doesn't prove fruitful, I'd do a private test. While you're at it, I'd include the vitamin panel as well as that's always very useful. Medichecks Advanced Thyroid Function Test or Blue Horizon Thyroid Premium Gold.
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
[* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.]
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
If you decide to do a fingerprick test and would like helpful tips then please ask and I will post them.
I had meant to reply to your post in more detail but family commitments (and energy levels) have delayed this until now!
With regard to my thyroid tests, the TSH was 1.5 mu/L (range 0.27 - 4.2).
Before i went for my blood draw, GP told me that it wasn't necessary to do a FT4 test as this would only be required if the TSH levels came back high – ditto antibodies. Looking back on my medical records over the past 10 years I can see that my thyroid levels were checked in 2011, 2012, 2016 and 2017 and each time Free T4 was always measured. My GP also told me when I asked him that it was not necessary for fasting / early morning appointment before the blood draw? I also didn’t know about not taking the B complex tablets for 7 days due to Biotin issues …..
Surprised about the lack of FT4 testing, as my understanding is that if it were a pituitary gland problem / central hypothyroidism as you suggest, the tests could show a normal TSH even though I have many (over a dozen) of the classic hypothyroidism symptoms, but surely FT4 would be needed too in this case?
I think a Blue Horizon test would be the way to go!
With regard to my thyroid tests, the TSH was 1.5 mu/L (range 0.27 - 4.2).
So at first glance that is a pretty good TSH level. A normal healthy person would generally have a TSH of no more than 2, often around 1, with FT4 around mid-range-ish. But you can have this level of TSH and still have Central Hypothyroidism but wouldn't know it unless TSH was tested and it came back at the bottom of, or below, range. This is why it's so important to test at least FT4 with TSH, but doctors don't seem to know this.
My GP also told me when I asked him that it was not necessary for fasting / early morning appointment before the blood draw?
Well, we just don't discuss this with them do we. The collective knowledge of expert patients, which you will find here, far outweighs what any doctor knows. There are a few enlightened endos who tell their patients exactly what we tell them about blood tests but they are few and far between.
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
I also didn’t know about not taking the B complex tablets for 7 days due to Biotin issues
Some NHS tests results actually put a caution about Biotin affecting test results but not all do, this would be seen by the GP checking the tests when they come back.
TSH in normal range? I think you need the actual figure and the range. Anything above 2.5 TSH and you’ll have hypothyroidism symptoms. My private only Endocrinologist informed me of this.
Do you have Patient Access to check. If not request it from your surgery. Also if not in the meantime get a printed copy off them. We can all have this information freely.
The NHS set their thyroid ranges too wide. And don’t treat either until it’s gone far beyond the ranges either. While the patient is suffering. Appalling I know but it’s true. It’s all about keeping budgets down.
So, get your results and repost on here I’d say. The quickest way to get real help is to go private. This is not the case because of the pandemic, this is down to poor understanding in the NHS of the thyroid by GP’s and poor/too wide ranges for them to work off.
With regard to my thyroid tests I have access to my patient records online,
The TSH was 1.5 mu/L (range 0.27 - 4.2).
Before i went for my blood draw, GP told me that it wasn't necessary to do a FT4 test as this would only be required if the TSH levels came back high – ditto antibodies. Looking back on my medical records over the past 10 years I can see that my thyroid levels were checked in 2011, 2012, 2016 and 2017 and each time Free T4 was always measured.
Mad isn’t it. How do they know just from a TSH blood test if it’s T4 or T3 or both that is potentially the issue. This would mean you’d need to see your Dr twice and use up valuable appointments. No wonder the NHS is in meltdown with this way of thinking along with over a decade of under funding. It’s maddening to go private but it really is the quickest route to getting diagnosed and tests.
Your TSH doesn’t seem bad at all. But without the T4 and T3 bloods at same time you wouldn’t know if you needed a slight increase with Levo T4 or trial Liothyronine T4. My latest TSH was 0.64(9.35-5.50) and my T4 and T3 where both mid way with leaving a number of hours gap of ingestion before the test.
I think I’m really lucky from what I read on here. My NHS GP always does the full tests TSH, T4 and T3. I also get folate, ferritin and vit D done every 3 months and B12 along with lipids and full bloods. It’s been this way for a couple of years now. So the NHS can do them all on a regular basis. Just some GP’s are mean with their budgets.
I found the least stressful way was to pay for a private blood draw and have the nurse visit me at home to action the necessary bloods.
When I had the results it was easy to see where my health issues were and I set about sorting things out for myself as my doctor in primary care didn't seem concerned and referred to me as a conundrum.
With the help of this amazing forum and a couple of books I've managed to turn things around for myself, as hve so many other members.
Start reading up on the Thyroid UK website who are the charity who support this forum and on other peoples posts on here, and you'll find things start to make sense and it's not as daunting as it may seem.
Thanks for your helpful advice - apologies for not replying sooner (family commitments and energy levels !). I think I am going to get tested privately as GP says he won't test for FT4 and antibodies with a "normal" TSH.
Doctors in primary care work to guidelines and for " thyroid " the guidelines aren't fit for purpose, but s/he is likely between a rock and hard place and we are where we are.
We have a solution and can get tested privately, so then just start a new post with the results and ranges on here and you'll be talked through anything that looks amiss and your next step back to better health.
We all start off on here with a full thyroid panel to include a TSH, T3, T4, antibodies, inflammation, plus ferritin, folate, B12 and vitamin D ;
Abstain from any supplements for the week before the test.
Do not take your T4 on the day of the blood draw until after the blood test.
Get an early morning appointment, fast overnight just taking in water only.
Thyroid UK the charity who support this forum hold the list of private blood test companies, some of whom offer a nurse home visit, depending on where you live.
If you roll this screen " up " you will see the number of people now registered on the Thyroid UK website :
I'm not sure it's a question of age, but the acceptance of the computer dogma, compounded by the lack of thyroid knowledge to challenge what seems " set in stone " , and the encouragement and expectation to write further prescriptions for somewhat " dubious " symptoms.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
help with nhs blood test please for hypothyroid
High TSH but "normal" everything else?
