Hi. I’ve had my TSH & T4 re-checked as both were on low side when tested in May. One GP, seeing them in May, given my symptoms, wanted to refer me to endocrinologist, but was overruled & told results were normal. Had them re-checked last week & both still at low end.
My ferritin was also low in May, but has gone up a bit (had 3 months of iron prescribed) - but I’ve GP said it should be 61 and it’s only 30 (was 15).
B12 folate was low in May too, but told it’s ok now
With the online searching I have done I’m more confused, and considering a private endocrinologist (but not working). Still exhausted, hair falling out, weight worst it’s been.
TSH - May 0.37 mU/L (0.3 - 4.2)
Nov - 0.69 mU/L
T4 - May 11.1 pmol/L (12.0 - 22.0)
Nov 12.1 pmol/L
Ferritin - May 16 ug/L (no range given)
Nov 31 ug/L
B12 folate - May 2.0 ug/L (2.9 - 5.0)
July 2.9 ug/L
Nov 3.4 ug/L
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KayS68
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Ferritin is still far too low. You need full iron panel testing for Anaemia
Think that's just folate result.
Is there also a B12 result (range usually 190-700 approx)
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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin D and 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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
NHS won't test FT3 - but you need it tested - at same time as TSH and FT4
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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
Your results possibly suggest central hypothyroidism and if that's the case you need to see a thyroid specialist endocrinologist
Ever had bump on head or whiplash?
Getting thyroid antibodies and vitamin D tested next step (plus B12)
If 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.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
Vast majority of UK patients need to get full testing privately in order to make progress
NHS will only test TG antibodies if TPO antibodies are high. Majority of Hashimoto's patients have either high TPO or high TPO and high TG antibodies.....but a significant minority have only high TG antibodies
Vitamin D is too low
GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
I am not medically trained, and I am not diagnosing, but what could be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:
You could do some more research, print out anything that may help and show your GP.
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before and maybe even the endocrinologist hasn't. Ask to see an endocrinologist who is a thyroid specialist and that may be hard to find. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
Ferritin: May - 16 ug/L and Nov - 31
Did your GP check for iron deficiency anaemia, which would need an iron panel and full blood count testing.
Are you still taking iron tablets?
Did you take your iron tablets with Vit C at the same time to aid absorption (also helps prevent constipation)?
Your GP wont know (they're not taught much about nutrition/nutrient levels) but Ferritin should be half way through it's range.
B12 folate
These are two separate tests - B12 and Folate. You've given results for Folate. Was B12 also tested?
May - 2.0 ug/L (2.9 - 5.0) ~ July - 2.9 ug/L ~ Nov - 3.4 ug/L
In May you were folate deficient. Were you prescribed folic acid?
Was Vit D also tested? With such dire results for these, it's very likely Vit D is low or deficient as well.
Very often with these type of nutrient levels, autoimmune thyroid disease, aka Hashimoto's, has caused it. Were thyroid antibodies tested? It's possible you may have Hashi's and not Central Hypothyroidism, so it's essential to test Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) antibodies to rule out (or in) Hashi's.
OK, I was looking for the kind of results that suggest iron deficiency anaemia with those, they're not as expected but as mentioned your iron panel does suggest iron deficiency so I think further investigation is needed.
They gave me 1 month of Vit D & GP last week just said “take some OTC over winter”, but the May result was when I was taking a sub-lingual supplement.
When you say you took a sublingual supplement, were you referring to Vit D or B12?
Your B12 level is far too low. Many people with B12 in the 300s have been found to need B12 injections. You should check for signs of B12 deficiency here:
and if you have any then list them to discuss with your GP and ask for testing for B12 deficiency/pernicious anaemia.
If you have been taking a B12 supplement and/or folic acid or a B Complex then these mask signs of B12 deficiency and skew results.
Is the unit of measurement pmol/L or ng/L or pg/ml (the latter two are the same). If ng/L or pg/ml then the following applies:
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."
**
Vit D - May 47 nmol/L (no range given)
How much Vit D did your GP prescribe?
You should retest your Vit D now. If GP wont do it then do a home fingerprick blood spot test with an NHS lab which offers this test to the general public (cost is £29):
Come back with the result and I will point you in the direction of where to work out how much D3 supplement you should now be taking and the important cofactors that are necessary when taking D3.
However, be aware that taking B12 will skew results. You need to be off B12 and folic acid/B Complex, if you've been taking it, and be tested for B12 deficiency/pernicious anaemia.
I can’t see on my online GP thing how much vit D they prescribed. I’ll try to call & ask.
You still need a new test to determine your current level so that you know how much D3 to now take.
With B12, to get a baseline which shows what we are holding on to we need to be off B12 supplements for 4-5 months. However, your past results are very low in range and your folate is dire so I'd just stop the B12 and push for testing.
I’m really frustrated as it’s a big practice, so I see different GPs. My depression has been really bad, so I feel like they’re only concentrating on that. I’ve got an appt with GP next Thurs - I’m going to go through this with him, but he’s one of the new, younger registrars. As a back up I have a phone appt with main practice GP, but not until Dec 2nd.
I would prepare for this appointment. Go through this thread, make a note of what has been pointed out that needs addressing, take evidence to back up requests for further testing where necessary. You have a lot going on, don't let the GP fob you off with "we can only discuss one thing per appointment", this is all connected and they aren't very good at joining the dots.
Thank you so much. I was just reading about central hypothyroidism too. I just want to feel “well”. Their response to the TSH & T4 was - that’s probably just your normal levels. And they HATE me sounding like I know more. But I’m going to print off all of the info in this thread. Thank you so much!
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