I've been feeling pretty unwell since November 2021 I kept have symptoms of hyper and hypo I would be find for a week or 2 then I'd hit rock bottom.
The start 2022 I started getting a rash and also on off sickness randomly and joint pains. I had a lot of tests done nothing was found.
2024 has been awful. I've had more bad days than good.
Tsh since 2022 has been 0.03 and 4 days ago it was 0.02 my t4 was 15
My current symptoms have been sweating, fatigue, dizzy, sinus issues, dry throat, increased anxiety and depression, poor sleep either too much or can't sleep I've also been struggling with my weight id drop lots fast then pile it back on. at all as a few to list
A note I have been actively trying to loose weight my bmi is 25 rn but my hunger has been insane and uncontrollable.
I have been told by an nhs Dr nothing is wrong with me it's all in my head I had to request they drop my levothyroxine from 100 mcg to 75mcg (I've been on 100mcg for 14 years to add)
I have hashimoto's confirmed through thriva, I have found out my dad's sister has graves. I'm having issues getting doctors to help me without dismissing me.
I've felt like my entire life I've been swinging in and out of hyper and hypo but apparently I'm suppressed and my thyroid is perfectly fine.
I apologise for the long post.
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Cablogin
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During your time taking Levo have you had a private test run to check if you are converting T4 to T3?
What is the reference range for your FT4? At 15 it doesn't look high by most ranges and when TSH isnt responding well its best just to look at free hormone results - FT4 & FT3.
I suspect you're not converting well.
The other thing that plays into our symptoms are low vitamin levels caused by low stomach acid.
What are your most recent vitamin results and what supplements do you take?
My last private blood test by thriva was done in 2022
Nhs range for ft4 is 7 to 20
And tsh is 0.03 to 5.0
2022 results from thriva
Tsh was 0.5
Ft4 19
Ft3 3.7
T4 124
My symptoms have massively changed since 2022 I've never had sickness, sweating, hunger issues like this before till the start of last year but increased this year. I also gained 16lb after a chronic sinus infection in April..
I don't have any results from drs about vitamins its only the last year my results are sent to my phone now
I remember most of the standard things like iron (mine was borderline and they did nothing about it as they marked as satisfactory no update needed)
What would you suggest I ask for blood test wise? It'll be difficult as I'm often dismissed but I can try if not save up to go private
So your FT4 is only 62% of range, not in the upper quarter yet and you have room for an increase.
2022 is a fair while ago but that test does show you dont seem to be converting well. Low FT3 can cause all sorts of horrible symptoms and you would probably benefit from getting some T3 added to your Levo.
You can email info@thyroiduk.org for a list of T3 friendly Endo's. Pick a few near you and make a post asking for feedback by private message only.
Ask GP for ferritin, folate, B12 & D3, full iron panel, thyroid antibodies. You might not get them all but its a negotiating point!
Otherwise Randox are currently the cheapest for blood testing or Monitor My Health. Discount code for MMH in link thyroiduk.org/testing/priva...
Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common with Hashimoto’s and as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Please add most recent results
Also VERY important to test TSH, Ft4 and Ft3 together
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
As you have Hashimoto’s it’s extremely common to develop gluten and/or dairy intolerance
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.
A trial of strictly gluten free diet is always worth doing
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
Some places don't ship to the isle of wight but I will see what I can get. I tried one of the sites randox and they don't deliver to me but I will check the links you send an email them
Does your Dr test your thyroid levels regularly? the last time mine was checked, they told me it was slightly high, I no longer have a thyroid it was removed along with a benign tumour. I now take 75 mcg and 50mcg on alternate days. I was feeling really tired. I had no energy at all, then I read other people's stories on this forum. I was really interested in the vitamin supplements, so I started taking iron and magnesium. I didn't expect them to have an effect, but I feel a lot better. I don't have brain fog, I stopped taking my car out because I couldn't concentrate , I'm sleeping better so I'm not waking up feeling worn out I'm not sure which supplement is responsible or if its a combination of the two, it beggars belief that drs don't tell you about the importance of taking vitamins, almost as if they don't know themselves..
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