So I've been having symptoms for 3 years and been under investigation with immunology who only took some blood samples 3 weeks ago. My gp has looked at the results and has said no action or treatment required. I've yet to see my consultant as my next appointment is Feb. I'm so deflated with the whole thing, the facial swelling is taking over my life, I hate how I look and cry every time I see myself I the mirror. I'm in constant pain and struggle to even hold a coffee cup in a morning. I've not had a definitive diagnosis but from research I really do believe it is hashimotos. My TPO result was 286 but because my TSH was 4.0 the GP has said there's nothing else that needs to be done. Can anyone offer any advise ? I'm at breaking point, I'm supposed to get married next year but can't bear the thought of having a swollen face, I exercise regularly as I have 2 dogs and no matter what I do I cannot lose weight.
Hashimotos help: So I've been having symptoms for... - Thyroid UK
Hashimotos help
My advice? Cut down on the exercise! Over-exercising when hypo can make you worse. And, with a TSH of 4 you are technically hypo, but doctors don't understand that. They like your TSH it at least go over-range on two consecutive tests. Your weight-gain has nothing to do with lack of exercise, anyway.
But, just testing TSH is utterly useless. You need your FT4 and FT3 tested as well. It's perfectly possible to have a decent looking TSH - although 4 is obviously too high - but very low thyroid hormone levels. TSH isn't even a thyroid hormone, it's a pituitary hormone, a messenger to the thyroid to tell it when to make more hormone. Your thyroid obviously isn't responding very well. But doctors don't understand that. Could you possibly get private testing so that you get a fuller picture. You need:
TSH
FT4
FT3
vit D
vit B12
folate
ferritin
If your antibodies are high, there's no point in redoing them, you know you have Hashi's. 286 looks pretty high to me, pretty certain that must be over-range and therefore positive.
Doctors have limited - and quite honestly useless - education on thyroid and don't really understand any of it. And therefore will do anything possible to avoid diagnosing and treating hypo. They will investigate anything and everything rather than bow to the obvious: i.e. you are hypo and that is what is causing your symptoms. And they very often ressort to 'diagnosing' fibromyalgia or ME/CFS instead. Never accept any such diagnosis, and refuse to have it in your records.
We're fighting a hard battle with this, and the only vaguely positive thing I can say is that with Hashi's it's just going to get worse until one day the numbers will fit in with your doctors limited vision and he will diagnose. In the meantime, get private testing and sort out any nutritional deficiencies you might have, because they will be making things worse!
Thank you so much for replying, I've posted a copy of the blood results below, I really appreciate the feedback and will push on with getting more tests 🙏
OK, seen the results. There's not much thyroid related, is there. TSH too high, TPOab positive, and vit D low. So, you do need more testing to get the full picture.
Hi greygoose could you possibly take a look at my results pls I'm in such a state
Not a good photo because we can't see the names of the tests on the left-hand side.
I'm assuming the first one is the TSh, which is on the high-side.
FT4 is 71.82% through the range, which is fine.
FT3 is 13.64%, which is not fine at all. Must too low, and showing that you are a poor converter.
rT3 is ok
The bottom one on the left I have no idea what it is, but the TPO antibodies are positive, so you have Hashi's.
But it really would be a good idea to repost this in a thread of your own, typing in the numbers so that we can see all the names of the tests. 
Just testing TSH is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (hashimoto’s)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Testing options and includes money off codes for private testing
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
See detailed reply by SeasideSusie
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Also
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
nice.org.uk/guidance/ng20/c...
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
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
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
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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.
Post discussing gluten
healthunlocked.com/thyroidu...
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
My TPO result was 286 but because my TSH was 4.0 the GP has said there's nothing else that needs to be done.
Get vitamin levels tested via GP
Improving low vitamin levels essential
Then get thyroid retested
ALWAYS book early morning test, and only water between waking and test
you need 2 tests with TSH over range (usually range is 0.2 - 4.2)
Starting levothyroxine - flow chart
gps.northcentrallondonccg.n...
Here's a copy of the bloods I had done, there's another photo I'll upload too, unfortunately they were not taken at morning, was around 4pm.
Here is the other set of results.Thank you for your responses it's really encouraging, I feel like i can go back and request something more now 🙏
no folate, B12 or ferritin results
Request these are tested plus coeliac blood test
Vitamin D far too low
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Thank you so much, I feel I've been quite naive with the results. Hoping that I'd finally have an answer and be getting somewhere but I can see there's still a long way to go. I've managed to get in with my consultant in immunology on weds, depending how that goes I'll order some private testing kits 🙏
Hi just wanted to give an update following my appointment with the immunologist. He basically said I didn't need any more thyroid testing and it wasn't hasn't hashimotos thyroiditis, I asked if it was hashimotos that would in time become hashimotos thyroiditis but he said no. I've been referred to rheumatology and dermatology (for the eye/facial swelling) and he's also requested a blood test for immunoglobulins. I'm not sure what to think anymore, feels like a constant brick wall 😕
Well immunologist needs to go back to medical school
My TPO result was 286
High TPO antibodies confirms autoimmune thyroid disease
They never call it Hashimoto’s
Get FULL thyroid and vitamin testing privately via Medichecks or Blue horizon
ESSENTIAL to test all four vitamins at least annually and maintain at OPTIMAL levels
Vitamin D at least over 80nmol
Serum B12 at least over 500
Active B12 over 70
Folate near top of range
Ferritin at least over 70
ALWAYS test early morning, ideally before 9am, only water to drink between waking and test
Stop any supplements that contain biotin 5-7 days before test
Come back with new post once you get results
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