Hi, first post but have been lurking on here for a while now and have learned a lot. I was diagnosed with underactive thyroid twenty five years ago. Didn’t know much about it then and relied on my gp completely. At the beginning of this month I asked, for the first time, for vitamins D and B12, ferritin, folate and antibodies to be tested which was agreed to.
FT4 16.5 (9.0- 19.1)
TSH 0.04 (0.35- 4.9)
FT3 3.8. (2.4- 6.0)
VitaminD 87 (50- 200.1)
VitaminB12 311 (187.0- 883.0)
Ferritin 92 (5.0- 204.0)
Folate 7.4 (3.1- 20.0)
Thyroid peroxidase antibody 76 (0.0- 6.0)
The gp talks about may be lower my dose which is 125mcg alternated 100mcg. I have felt unwell most of the last thirty years and especially this year, with fatigue, brain fog etc and feel I need to increase my dose. He said all the tests are normal but should I be taking supplements too?
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Jphill49
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Can I add that due to gastro intestinal issues I’ve changed my diet to dairy free, no sugar and cut out tea and coffee because of other issues. It’s resulted in a weight loss of 16lbs but would that affect thyroxine dosage? Unfortunately the change hasn’t made a difference, to how I feel.
The gp talks about may be lower my dose which is 125mcg alternated 100mcg.
Did your GP say why he wanted to lower your dose? I'm assuming because of your TSH being below range. Well, that's not a problem because your FT4 and FT3 are well within range; however, your FT3 is very low in range compared to your FT4 and they would be better if they were fairly well balanced. Low T3 causes symptoms and this could be why you are feeling fatigued, brain fogged, etc.
Your FT4 is 74.26% through range which is a nice level but your FT3 is just 38.89% through range which is too low and suggests poor conversion of T4 to T3, T4 being a storage hormone that converts to T3 which is the active hormone that every cell in our bodies need. Unfortunately doctors don't seem to know this, it seems that they are taught that TSH is the only result that matters.
Calculator for working out percentage through range:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
You could print it and highlight question 6 to show your doctor.
Your FT4 and FT3 don't suggest that you need to lower your dose, I would keep it as it is.
**
Optimal nutrient levels are needed for good conversion of T4 to T3 and you have a bit of a mixed bag.
VitaminD 87 (50- 200.1)
This isn't too bad but the Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.
If you want to improve your level then to reach the recommended level from your current level, you could supplement with maybe 2,000iu D3 daily.
Retest after 3 months to check your level.
Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
This seems to be at a decent level. Ferritin is recommended to be half way through range although some experts say that the optimal ferritin level for thyroid function is 90-110ug/L.
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VitaminB12 311 (187.0- 883.0)
Is this pmol/L or ng/L or pg/ml? Whichever it is on the low side and many people with a level in the 300s have been found to need B12 injections.
Do you have any signs of B12 deficiency – check here:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
If you don't have any signs or symptoms then it may be worth supplementing with some sublingual methylcobalamin to bring your level up to 550pg/ml (or ng/L, they are both the same).
When supplementing with B12 we also need to take a B Complex to keep all the B vitamins balanced.
Once you've reached 550pg/ml you can then just continue with the B Complex.
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."
Folate 7.4 (3.1- 20.0)
Folate and B 12 work together. Folate is recommended to be at least half way through it's range, eating folate rich foods will help, as will the B Complex.
My suggestion for a sublingual B12 is Cytoplan as this contains two of the active forms of B12 - methylcobalamin and adenosylcobalamin.
My suggestion for a B Complex is Thorne Basic B which contains the active forms of the ingredients. Avoid a B Complex that contains Vit C as this keeps the body using the B12 in the B Complex, Vit C and B12 should be taken 2 hours apart.
When taking a B Complex we should leave this off for 3-7 days before any blood test as it contains biotin which gives false results when the testing procedure uses biotin (which most labs do).
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
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Thyroid peroxidase antibody 76 (0.0- 6.0)
Your raised antibodies suggest that you are positive for autoimmune thyroid disease aka Hashimoto's which is where the immune system attacks the thyroid and gradually destroys it. It is the most common cause of hypothyroidism.
Fluctuations in symptoms and test results are common with Hashi's.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed. Selenium can also help with conversion of T4 to T3.
It’s resulted in a weight loss of 16lbs but would that affect thyroxine dosage?
It may or may not. I have varied by a good stone or more and I haven't had to alter my dose, we need what we need and our symptoms are the most important indicator.
Once your nutrient levels are all optimal, if your FT3 doesn't rise it may be that you would benefit from a small amount of T3 added to your Levo, but getting that on the NHS is very difficult, it has to be initiated by an endo and if your GP was to refer you with your current results your referral would be refused due to your results being in range (except for your TSH).
Thank you so much for all the information, quite a bit to take in and very useful. I think the gps’ are always concerned with my tsh level. Over the years ft4 has fluctuated, sometimes a little over the top of the reference range, the tsh suppressed. It did this in January this year although t3 and t4 were the same as above. Gp said I was over medicating and hyperthyroid. A follow up in July was normal, but was marked as abnormal and subclinically hyperthyroid..
Over the years ft4 has fluctuated, sometimes a little over the top of the reference range,
That will be the Hashi's activity, you would have been going through a false "hype" phase, that would then pass and you'd be back to normal or hypo.
It did this in January this year although t3 and t4 were the same as above. Gp said I was over medicating and hyperthyroid.
No, you can't be hypERthyroid, it's a physical impossibility when you are hypOthyroid. You can only be hypERthyroid when your thyroid produces too much thyroid hormone, and when you're hypOthyroid your thyroid doesn't produce enough. But you can be overmedicated. But it's not TSH that tells us we're overmedicated, it's only when FT3 is over range that we are overmedicated, but again GPs don't understand this, their knowledge of thyroid conditions borders on ignorance unfortunately.
A follow up in July was normal, but was marked as abnormal and subclinically hyperthyroid..
Presumably based on the low TSH? As above, it's not hyperthyroid and TSH should not be used to establish thyroid status, it can't tell us that because it's not a thyroid hormone, it's a pituitary hormone. FT4 and FT3 are the thyroid hormones and these are what tells us our thyroid status. If FT3 is within range we are not overmedicated.
I should have said that ft4 was over range while the other ft3 and tsh were the same as this month’s results. Yes I understand what you are saying about the hyperthyroid comment. That’s why I’ve lost all confidence in the gps’ and finding my answers on here instead. Thank you.
I wasn’t at all well till I got my T3 to over 6. Got some T3 from Endo and self sourced a bit more. I’d be trying to get a trial of T3 from an Endo. The aim of medication of course is to alleviate symptoms, not get you to a number in a statistical range - remind the doc.
Thank you, yes you’re right regarding how you’re feeling rather than the numbers. The last gp I spoke to actually asked me how I’m feeling, but proceeded to talk about the numbers. I do remind them but they’re not listening.
But BEFORE cutting gluten out get coeliac blood test done
Lactose intolerance often improves after year or two on strictly gluten free diet
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 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
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.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Thank you for the links, a lot of reading to do. I think I had a coeliac test done in January along with other tests for kidney, liver functions etc. I’ll have to check back. Would it be listed as coeliac or a different name or code?
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Feeling a bit lost again need some guidance please
Diagnosed with folate deficiency... and lost a lot of weight 
