Does anyone with hypothyroidism suffer real dips in their ferritin levels and suffer horrendous fatigue dizziness and headaches ? I’ve had a couple of iron infusions in the past when levels have been at 10 and 42 but the GP seems happy with my level at 31 this time even though I have been feeling so unwell! My thyroid bloods are
This is all being monitored because we’re hoping to start ivf in Jan but no one has told me what my optimum levels should be so I just feel lost and I don’t think 50mg of thyroxine is enough
Any advice would be so so helpful
K x
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Bride2be
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Your FT4 is far too low, it's only 17.28% through it's range.
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
You need an increase in your dose of Levo and should ask your GP for this using the following information:
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
print it and highlight question 6 to show your doctor.
Your ferritin level is too low at 31. According to some experts the optimal ferritin level for thyroid function is between 90-110 ng/ml; however, GPs don't seem to know this, in fact they have little to no training in nutrients that they don't understand that we Hypos need optimal nutrient levels for thyroid hormone to work properly.
As well as ferritin, do you have results for Vit D, B12 and folate?
Have you had an full blood count and iron panel - these will tell you if you have anaemia and/or iron deficiency.
Bloods should be retested 6-8 weeks after each dose increase
Likely to need at least 100mcg levothyroxine per day (unless extremely petite)
Essential to regularly retest vitamin D, folate and ferritin
Ferritin is currently far too low
Are you currently taking any iron supplements?
Are you vegetarian or vegan?
What vitamin supplements are you currently taking, if any
guidelines on dose levothyroxine by weight
Even if we 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 on full replacement dose
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.
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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
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
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.
Thyroid disease is as much about optimising vitamins as thyroid hormones
See in previous post that you have autoimmune thyroid disease also called Hashimoto’s
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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 and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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.
Ask GP for 25mcg dose increase in levothyroxine up to 75mcg
Plus vitamin D and folate tested
Plus coeliac blood test too BEFORE trailing strictly gluten free diet
Which brand of levothyroxine are you currently taking
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Hi SlowDragon, I wonder if you can help with something linked to the above? I’ve spoken to my gynaecology nurse who highlighted the fact that my free T4 had dropped from 16.1 to 9.3 in the space of a month whilst I’m on 50mg of thyroxine. She’s going to run this past my fertility consultant to see what he advises in terms of levels going forward for fertility but do you know what might cause such a drop in such a short time? (TSH remains around the same) Thank you
How long have you been left on 50mcg levothyroxine??
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists.....
..NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Thank you SlowDragon, I will get in touch with Dionne as I may need to see an endocrinologist. I have been on 50mg thyroxine since April and my GP is still unwilling to raise the dosage even though I have been having awful symptoms and my FT4 has recently taken such a dramatic drop.
I weigh just under 70kg and that hasn’t changed dramatically either.
So based on the above calculation I should be on at least 100mg of levothyroxine now. I will see what the gynaecologist suggests. Important what you say about vitamin levels too
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