Hi all, newbie here and hoping someone can provide some wisdom! Apologies in advance for this long post.
I recently asked the GP to do some blood tests as I have been feeling increasingly awful for a while and a friend who has Hashitmoto’s suggested my symptoms sounded a lot like hypothyroidism.
Symptoms I’ve had for a while:
•Constant fatigue and low energy
•Heavy periods
•Joint aches and muscle weakness
•Brain fog
•Inability to lose weight
And more recently (or have got worse in last 6 months)
•Blurred vision
•Depression/anxiety
•Swollen feet and ankles, and increasingly a weird feeling of my skin being tight all over
•Puffy face and bags under my eyes
•Erratic menstrual cycle, including missed periods
•Increased PMT/mood swings/bloating around period
•Slow thoughts (can’t find words etc)
•Steady weight gain
•Feeling cold/cold feet that can’t get warm
•Pins and needles in fingers.
GP agreed to test for thyroid and said she would also check some other things. Apparently everything came back fine, except my ferritin, which is 14 ug/l (15-300). (Bloods show I’m not anaemic.) This is obviously pretty low, so GP thinks this is what is causing all my symptoms. She may be right. I have heavy periods and have struggled with low iron over the last decade, however over the last 6-12 months I have been feeling increasingly odd and my instinct is that something else might also be going on.
This prompted me to look back over the copies of old blood tests I had from when I was trying to conceive in 2011 as I was briefly referred to an endocrinologist as my bloods showed ‘mild hyperthyroid’ (and they suspected an autoimmune issue affecting my low egg count). Results then were: TSH: 0.01 mu/L (0.2 – 4.5), Free T4: 18.1 pmol/L (9.2-24.5), Free T3 7.7 pmol/L (2.6-5.7).
At the time I didn’t engage much with my test results as it made no sense to me that I could be hyper thyroid, I had no symptoms etc. And when I was seen by an endocrinologist in May 2012, he said my levels of TSH and FT4 had gone back into normal range. He told me it was just ‘a blib’ and not to worry about it.
Looking back at the 2011 results though I can see I had a positive test for TPOAb 176.1 iu/ml (0.0 – 6.0). No one mentioned this as significant at the time.
June 2020 results are:
TSH: 2.18 mu/L (0.3-4.4)
FT4: 9.7 pmol/L (9.0-19.1)
FT3: 3.6 pmol/L (2.9-4.9)
Ferritin: 14 ug/L (15-300)
Folate: 8 ug/L (>3.0)
B12: 590 ng/L (180-900)
Annoyingly she didn’t test Vit D but I am usually low in this too.
My question is, does the TPOAb test in 2011 mean anything now? Does it mean I am more likely to develop thyroid problems and should suspect that as a cause if I’m experiencing symptoms. Or is it most likely all my symptoms are caused by low iron and I should stop obsessing about thyroid (which is obviously what the doctor thinks). She wants me to come back in 3 months after taking iron (2x300g ferrous gluconate per day, I’m sure I’ve been given a higher dose before so not sure if this is high enough) to test iron again.
Would you wait until then and see if symptoms are better, and if not ask for more comprehensive thyroid tests then? Or just get some private tests done now to check TPOAb levels now.
Thank you for reading this very long post!
Written by
Dazeddaisy
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You don't need your antibodies retesting. Once you've had an over-range result it means you have Hashi's, and will more than likely eventually go hypo. Although Hashi's usually starts with a hyper phase, which must have been what you had in 2011, although you only caught the end of it.
Antibodies fluctuate, but even if they go very low, you still have Hashi's as it doesn't go away. Doctors don't mention it because they don't understand the significance.
Right now, your TSH says your thyroid is struggling to produce enough thyroid hormone to keep you well. Your FT4 is very low, and your thyroid is concentrating on making T3, because that is the active hormone. But, eventually that, too, will drop and your TSH will rise. But, unfortunately, the majority of doctors in the NHS won't diagnose you until your TSH goes over 10.
Hypos usually have low nutrients because their stomach acid is low, causing difficulties in digesting food and absorbing nutrients. You could try raising stomach acid, for better absorption, but taking a spoonful of Apple Cider Vinager, in water, and drunk through a straw, before meals.
So your high thyroid antibodies test from 2011 confirms autoimmune thyroid disease also called Hashimoto’s
Hashimoto’s almost always starts with transient hyperthyroid results and symptoms,before becoming increasingly hypothyroid
Your present day results show you are hypothyroid
When hypothyroid we tend to develop low stomach acid and this lowers vitamin levels
Low vitamin levels are result of being hypothyroid.
Heavy periods are classic sign of being hypothyroid too
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
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
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.
SlowDragon & greygoose thank you so much for taking the time to reply. I'll get reading all the links you've provided.
So it sounds like there's not much point in going back to the GP at the moment, but I should focus on diet and vitamin levels to try and reduce symptoms in the meantime. Can I ask, even though I'm not outside any of what the NHS will refer to as 'normal' ranges, do you think my levels (eg low level of FT4) are enough to be causing some of the symptoms I listed?
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