Would really appreciate some advice on fluctuating free T4 levels - having had a dose increase from 50 to 75mg end of September 23, T4 finally went up to 16.7 (range 11.50 -22.7) in December - I know this still needs improvement and I still have the full range of symptoms but doctors wouldn't increase my dose.
I've recently had my bloods done at the GP surgery ahead of a (long awaited) appointment booked privately with a thyroid specialist GP in Bristol (found through Thyroid UK) and it's next week - yay! But my free T4 level is back to 13.2! Why is this? I understand fluctuating tsh but I'm surprised by my T4, unless it shows the disease progression?
Attaching my recent bloods (I know iron is still appallingly low, even after 5 months of liquid ferrous fumerate but I'm working on that and having the coil inserted next week to stop the heavy monthly periods. )
Any pointers for the appointment would also be appreciated - I want my dose increased of course and for a letter to go to the GP explaining why, this feels like a real opportunity to finally be heard!
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Thyroid16
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You have yet to reach your optimal dose and are also in the relatively early stages of Hashi's where levels can swing either way for quite some time. It will be quite a while before your levels stabilise.
Your B12 is on the low side and also folate is all but deficient. Its sugested to take a good active/methyl type B complex which will raise both levels.
Folate - aim for a level of 20. Recommend taking an active/methyl (should say on label) B complex which contains 400mcgs folate (also B12). Slightly cheaper options with inactive B6:
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...
Thanks ever so much Jaydee - that's really useful info about the levels to aim for for B12, folate and Vit D - they don't tell you that! I find the 'normal, no action' commentary so frustrating as it's unhelpful and masks so many problems related to the thyroid. Wish me luck for next week
Aiming for Ft4 (Levothyroxine) at least 60-70% through range
Ferritin is terrible
What has GP prescribed
Vitamin levels are low BECAUSE you are not on high enough dose levothyroxine
Have you had coeliac blood test yet
If not, get tested as per NICE guidelines
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thanks SlowDragon. I was gluten free, re-introduced and have been tested for Celiac disease (negative) and have since reinstated gf diet. Doctor prescribes 2 x 5 ml ferrous fumarate a day (which I take mid morning, 6 hours have levo and mid afternoon) - it's made virtually no difference after 6 months but I have heavy bleeds too so having coil inserted next week to see if that helps with menstrual flow and ferritin levels. I've also introduced a pro-biotic to help gut heal. So your thinking is that the vitamin deficiencies are due to the under-medicated (and previously un-medicated) thyroid issue. Would you suggest that I put that to the thyroid doctor next week? She requested these tests beforehand so hopefully will come to that conclusion.
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
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.
Thank you for sharing. I have had 2 dose increases to 75 mg (though still on measly amount of levo and still symptomatic) and my t4 has virtually stayed the same, expect for one blood test. It's very disheartening - I wouldn't mind if I was seeing an improvement in symptoms but it improves for a short time and then back to where I was. I sometimes wonder if I'll ever feel normal again.😪
I literally know how you feel and I hope we both do get better.
Hang in there. You are not alone. There are many days I feel like you, with the added desperation to have a baby too when I am hardly getting any younger (I am not saying I have it worse).
Thank you ❤️ I just read your bio and so sorry to hear of your pregnancy loss. I had my little girl at 40, 39 when I was pregnant (I'm 45 now) and was definitely hypothyroid then (undiagnosed) - I hope that gives grounds for optimism. Happy to chat more. 🥰
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Doctor prescribes 2 x 5 ml ferrous fumarate a day (which I take mid morning, 6 hours have levo and mid afternoon) - it's made virtually no difference after 6 months but I have heavy bleeds too so having coil inserted next week to see if that helps with menstrual flow and ferritin levels. I've also introduced a pro-biotic to help gut heal. So your thinking is that the vitamin deficiencies are due to the under-medicated (and previously un-medicated) thyroid issue. Would you suggest that I put that to the thyroid doctor next week? She requested these tests beforehand so hopefully will come to that conclusion. 
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