Thanks to the advice of the amazing people in this community, I have finally been diagnosed.
I went for more blood tests on Tuesday, taking the advice of the community, I fasted and the test was done at 9:10am.
I got a phone call from my GP this morning and they said my TSH and antibodies were high and she is starting me on 25mcgs of levothyroxine. Wants me tested in 8 weeks to see levels and whether to increase. Unfortunately, the surgery was closed this afternoon so I was unable to get a print out of my results.
I also got my private test results from medicheck and the results are as follows:
TSH 7.11 0.27 - 4.2
Free T3 5.39pmol/L3.1 - 6.8
free thyroxine 15.2pmol/L 12-22
THYROGLOBULIN ANTIBODIES 317 0 - 115
THYROID PEROXIDASE ANTIBODIES 600 0 - 34
FERRITIN. 38.2 30 - 150
Folate 14.7nmol/L8.83 - 60.8
B12 102pmol/L37.5 - 188
Vitamin D 71.8nmol/L50 - 250
I’d appreciate your advice on these results. Do I have Hashimotos? Or do I need further testing to find that out?
many thanks 😊
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MsWhistledown
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In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Your GP should do a full iron panel to confirm iron deficiency, the tests should include serum iron, saturation percentage, total iron binding capacity and ferritin.
To see if you also have anaemia a full blood count should be done.
You can have iron deficiency with or without anaemia so both tests need doing.
Folate 14.7nmol/L8.83 - 60.8
This is very low and folate is recommended to be at least half way through range which would be 35 plus with that range. Eating folate rich foods plus supplementing with a good quality bioavailable B Complex should help raise your level. Consider Thorne Basic B, Vitablossom Liposomal B Complex which is branded as Yipmai on Amazon. Pink Tribe brand on Amazon is very similar. Any of those would be OK.
Remember to leave of B Complex for 3-7 days before any blood test as it contains biotin which gives false results.
B12 102pmol/L37.5 - 188
This is fine, we suggest 100 plus. Do you supplement?
Vitamin D 71.8nmol/L50 - 250
Vit D is recommended to be 100-150nmol/L according to the Vit D Council, Vit D Society and Grassroots Health, with a recent blog post on Grassroots Health recommnending at least 125nmol/L. You may be able to increase your level naturally during the summer so if you don't supplement you should test again at the end of October to see if you need to supplement during the winter months.
The following will help you work out how much Vit D you should take to achieve the recommeded level. To work out 71.8nmol/L in ng/ml (the unit of measurement used in the article, then divide it by 2.5 which gives you 28.72ng/ml.
I’m going to work on my diet now and supplementing as you have advised. I’m still waiting for some other results of my blood tests from Tuesday which I think included full blood count.
I did supplement but slacked off the past few months due to stomach issues. I will get back on it now though.
I would not have known about how to take the supplements especially iron away from other supplements. Thank you 😊
1.1.1 Offer serological testing for coeliac disease to:people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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 or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and 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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Standard starter dose levothyroxine is 50mcg, unless over 65 years old
Starting on 25mcg, may make you feel more hypothyroid after 3-4 weeks as TSH starts to reduce and your own thyroid starts to not work so hard
Levothyroxine doesn’t top up failing thyroid, it replaces it
Get bloods retested 6-8 weeks after starting on levothyroxine and then can get dose increased to 50mcg
Likely to need more increases in dose over coming months
Always test thyroid levels early morning and last dose levothyroxine 24 hours before test
Watch out for brand of levothyroxine too
Many people find different brands of levothyroxine are not interchangeable
Only 3 brands make 25mcg tablets…..mercury Pharma, Wockhardt or Teva
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free. But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
I have been reading that iodine can have a negative affect on thyroid function. I am wondering whether I should be careful about how much intake I have of that? For example I drink alpro soya milk for my cereal and tea. It has iodine added to it? Do you think I should swap this out to soya milk that doesn’t have iodine added to it?
There is conflicting advice about soya and hypothyroidism and it's often recommended to avoid it. You might want to consider an alternative milk substitute. I've included an article about this but you can, of course, look into it further:
Thanks SlowDragon, I have tried oat milk and can’t stand it. Also found it upset my tummy a bit. Maybe that wasn’t a gluten free one? Will source another alternative to try.
I’m new here - I’m the process of getting diagnosis and treatment. Can I ask what the reasoning is for checking levels in the morning? And the need to fast?
All of my tests have been in the afternoon around 3pm - my antibodies are extremely high 2000.
Please note - I have severe health anxiety and trying to trying to navigate this all in the best way - so please be kind!
The reason for testing first thing in the morning is that the hormone that doctors take most notice of, TSH, varies throughout the day, and is highest in the early hours of the morning. Testing as early as possible in the morning means you are more likely to be diagnosed or get a dose increase than if you test in the afternoon. Hope that helps.
The lovely experienced people of this forum will give you great advice regarding your question. I am new here as well and without them I would not have been diagnosed anytime soon. I was having my blood tests done in the afternoon after eating lunch and it wasn’t showing the true levels of my thyroid. By fasting and having blood test around 9am it showed high levels revealing hypothyroidism/Hashimotos. The experienced people on this forum will it explain it much better than me. Definitely worth posting your question separately so everyone can see it.
Wishing you good luck on your journey and hope you are feeling better soon 😊
Thank you everyone that’s super helpful - sorry to hijack your thread MsWhistledown ! I have ordered the medicheck thyroid kit as finding my GP unhelpful (not least because it’s literally a different one I speak / see each time)
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