hello. I’m new to the group I’ve had under active thyroid for approx 2 years diagnosed during covid. I was just told over the phone you need thyroxine it’s sent to the chemist and that’s all the info I got. I’ve had another blood test as my shoulders and hips are in almost constant discomfort all that’s comes back is my iron is low and my ferritin is high. My doctor doesn’t seem to know why. Also I take iron supplements vit d and b12. Does anyone have the same? Tia x
ferritin high: hello. I’m new to the group I’ve... - Thyroid UK
ferritin high
welcome to the forum
how much levothyroxine are you currently taking
How long on this dose
Which brand levothyroxine
Do you always get same brand at each prescription
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
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
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Thank you soo much for your reply.
I’m currently on 50mg
Brand is levothyroxine
Been on this brand and amount for the whole almost 2 years .
Only ever had tsh test for my thyroid
Not the other two.
I will look into getting this done privately.
Thank you
what is your most recent TSH
Was test done early morning and last dose levothyroxine 24 hours before test
50mcg is only standard STARTER dose levothyroxine
Typically dose Levo is increased slowly upwards in 25mcg steps (occasionally smaller 12.5mcg increase) over 12-18 months until on approximately full replacement dose
That’s typically 1.6mcg of levothyroxine per kilo of your weight per day. So unless extremely petite likely to eventually be on at least 100mcg levothyroxine per day
Being left on inadequate dose levothyroxine will directly result in low vitamin levels
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, 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
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Despite almost 2 million people in U.K. being on levothyroxine it’s astonishing just how many GP’s don’t know to follow guidelines
my iron is low and my ferritin is high. My doctor doesn’t seem to know why. Also I take iron supplements vit d and b12.
Ferritin rises with inflammation
So you can have low iron but high ferritin
Please add vitamin results and ranges
Hello, I’m sorry to hear about your problems. Keep reading posts & advice here and you’ll learn a great deal which will help you help yourself, which unfortunately we need to do as the NHS doesn’t do a good job of caring for people with hypothyroidism.
I thought I’d write with some information about your high ferritin reading. It’s mostly likely high as there is inflammation somewhere in your body. You say that your shoulders & hips hurt. This might be the source or there might be others.
I’ve been bothered with very high ferritin readings for several years now. Increasing every time I test until now. A few months ago I started eating a low carb diet & this week my blood test shows ferritin level has halved and is almost in range. I’m so pleased. This might work for you too. Intermittent fasting could also work. Do some research about eating plans if you’re interested. Taking turmeric might also help reduce inflammation.
Hope you can follow up on the advice previously given & that you start to feel better soon.
It would be helpful if you could give us recent results for an iron panel including the reference ranges.
Are you supplementing iron just now?
If yes, what kind, in what form, and in what dose? And how long have you been supplementing iron?
This first link describes what is probably the most common reason in people with thyroid disease to have high ferritin and low serum iron.
1) irondisorders.org/anemia-of...
I have never really understood why doctors insist that ferritin tells them what they want to know about iron, and serum iron is not important. As far as I can tell serum iron is what is the most freely available iron in the body, and will presumably be the first to be made use of when the body needs it.
2) Another link on the same subject...
See page 8 in this document :
web.archive.org/web/2020021...
3) An interesting article on ferritin :
web.archive.org/web/2013112...
The above article contains this paragraph (SF = Serum Ferritin) :
Serum ferritin is a good measure of iron stores, especially for someone who is iron-deficient. Serum ferritin can be elevated in people with iron overload: hemochromatosis, Wilson’s disease (copper overload; aceruloplasminemia), porphyria cutanea tarda (PCT), African siderosis, fatty liver disease (non-alcoholic steatohepatitis [NASH]), alcoholic liver disease or from excessive consumption of supplemental iron. SF can also be elevated in conditions where both iron overload and anemia are present generally seen in patients with red blood cell production abnormalities (thalassemia, sickle cell disease, sideroblastic anemia). Often these individuals require long term red blood cell transfusions to correct anemia and to sustain life. Additionally, ferritin can be elevated in chronic renal (kidney) insufficiencies, infections, chronic inflammation, some forms of leukemia and cancers.
4) A link about anaemia you might find helpful in the future :
Are you happy to post your full results?