My latest blood results and an ultrasound which showed my thyroid was dead - no blood supply there - said the ENT consultant.
Vit B12 484ng/L (197- 771)
Folate 4.oug/L (2.0 - 18.7)
Ferritin. 147.0 ug/L (20 - 260.0)
Serum T4 20.8 pmol/L (11 -23)
Triiodothyronine 4.0pmol/L (3.1 - 6.8)
TSH 0.1 miu/L (0.27 -4.5)
200 levothyroxine
Vit D /Selenium /Folate Gluten free
Any suggestions of self help to make me feel better please?
How do you feel? What symptoms do you have?
Free T4 (fT4) 20.8 pmol/L (11 - 23) 81.7%
Free T3 (fT3) 4 pmol/L (3.1 - 6.8) 24.3%
So you're a poor converter, your FT3 needs to be above 50%.
What and how much folate are you taking? Your folate is almost through the floor?
Usually it would be recommended to take a quality B Complex that also contains B12 & folate. This one is best value for money, can also be bouht cheaper as a twin pack.
amazon.co.uk/Liposomal-Soft...
No result for vit D3. Taking K2 with D3 helps it go towards your bones.
Have you been tested for antibodies? If positive then trialing a gluten free diet helps many. Some others also benefit from removing dairy from their diet.
My voice has been hoarse for 2 years now and my throat feels restricted when I swallow. These symptoms plus my father having thyroid cancer resulted in an ENT appointment and an ultrasound scan which shows my thyroid had no blood supply and has been dead for a long time. I was diagnosed with thyroid problem 10 years ago, quite by accident.
The antibodies you mention were last tested in November
Thyroid peroxidase antibody concentration >600 kU/L (<34)
Also in November I had a
Binding site inhibitor Globulin Level
1.76u/l (<1.74)
These results looked important yo me but obviously not so to those who could do something about my numerous symptoms.
My Gran on Mum's side also had a thyroid issue. I don't know whether she knew or was treated but she died of Myxadema aged 67.
I am told by my Gp that all is well!
Which folate are you taking?
Hello A1Amber ;
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10mcg + a measure of T4 at around 100 mcg - and please be aware that T3 is said to be around 4 times more powerful than T4.
So with no thyroid function you will likely feel better on either a T3/T4 combo -
Big Pharma's T3 - Liothyronine + T4 - Levothyroxine - thyroid hormone replacement medications -
or by taking the fullest of all the thyroid hormone replacement options -
Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids dried and ground down into tablets referred as as grains.
20 odd years ago all the above treatment options were available through your NHS doctor in primary care but currently you need to be assessed by an endocrinologist for anything other than T4 monotherapy.
It is also a bit of a post code lottery as to where you live and to how your local CCG/ICB interpret the NICE guidelines.
I think I remember reading that your eyes are also problematic so just ensure that any drops, lotions, sprays and even the gunky heavy duty overnight grease are Preservative Free even those prescribed.
Which ever treatment is offered you will still need to maintain your ferritin, folate, B12 and vitamin D at optimal levels for optimal conversion of T4 to T3.
I now aim for a ferritin at around 100 : folate at around 20 : active B12 at around 75 ++ and vitamin D up at around 100.
We generally feel at our best when our T4 is in the top quadrant of the range, which yours is, as this should in theory convert to a decent level of T3 at around a 1/4 ratio T3/T4 :
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 - T3/T4 - so if I divide your T4 result of 20.80 by your T3result of 4.00 - I'm getting your conversion ratio coming in at 5.20 showing poor conversion.
Obviously you will start to feel better and your metabolism improve once your medication reflects the findings of this thyroid scan, which I presume was ordered by an endocrinologist to help him/her asses your current thyroid health status and hopefully a view will now be taken to offer you a different option of thyroid hormone replacement.
Hi Pennyannie and thank you for taking the trouble to send such a detailed response.
I really am at a loss here.
I am not under the care of an endocrinologist. My Gp insists that in this area the primary trusts handle all thyroid issues.
My hoarse voice/throat restriction resulted in an ENT appointment and a consultant there hold me about my thyroid being dead.
An eye test with Specsavers revealed I had lost peripheral vision and I was referred to a occuplastic ? surgeon who recommended I take selenium for 3 months as the eye swellings may be thyroid related.
I consulted a private endocrinologist last year through Spire. I was misled as endocrinologist did only telephone consultations and requested blood tests via my Gp. That was a real caper and ended with the endocrinologist saying all was well, £600 worse off and come back if you need me.
What a game!
I am really disenchanted with all this but not confident to source/ try other medications.
Sorry I sound so downbeat. I'm really annoyed with myself.
Don't be annoyed at yourself - it's not your fault that you are ill and have found no support nor help in your primary care doctor.
I've been there, as have many forum members and why we come back on, once sorted, to try and give back some support, help and advice to others in similar situations.
Living without a thyroid affects all aspects of one's life, from the physical through to the mental, emotional and psychological.
I wonder if there are more face to face consults now - did you use the Thyroid UK list of recommended thyroid specialists, doctors and endocrinologists ?
email admin@thyroiduk.org if you haven't the list.
There are also TED clinics run by the charity Thyroid Eye Disease -
where as I understand it patients are signposted to their nearest clinic where you my well find an endocrinologist working alongside the optician with the patient as to the best treatment options.
Where are you - do you know how active your surgery/ CCG area are in prescribing other treatment options.
If you go into
you can see by surgery and/or area - just how supportive your surgery is to prescribing other options, just enter Liothyronine as the drug and Armour as the brand of NDT.
I have to confess fighting the system for adequate care simply exacerbated my symptoms so after being refused both T3 and NDT in 2018 I started self medicating and am much improved.
I'm post RAI thyroid ablation in 2005 for Graves Disease and now managing lingering Graves, thyroid eye disease and hypothyroidism - details on my profile page
Thank you Pennyannie. For giving me much food for thought!
Actually the Endo I consulted was recommended by someone on here. I did contact tedct.org and they contacted me a week before my occuplastic appointment. I told them of this and they said 'that's OK then'. Perhaps I should make contact again as the Selenium has not had the desired result although I am still taking it.
I shall follow your suggestions and try a little self help.
Be kind to yourself -
I think once I'd settled down after being rejected for anything other than T4 monotherapy and having to have a TSH in the range - anger took over as this was all because of a treatment option I was told I was to have, though well on the AT medication, and told that I would be so much better afterwards.
I trusted the medical profession and that trust was now broken and the anger drove me to look at self medicating and it worked for me.
I made a couple of mistakes self medicating but nothing so dramatic that my confidence disappeared - it was a learning curve - and thankfully I've come out the other end better equipped to manage myself..
I'm deeply disappointed and disillusioned in the medical profession and just thankful I haven't needed to see any doctors for the past 5 years and currently I'm able to manage myself.
First steps
Get vitamin D tested
NHS easy postal kit vitamin D test £29 via
How much vitamin D are you currently taking
Are you taking any magnesium or vitamin K2
Start on GOOD quality vitamin B complex
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement
if not already on strictly gluten free diet
Get coeliac blood test done via GP (if possible)
Otherwise test yourself £20 online kits available
Post from a year ago
healthunlocked.com/thyroidu...
Are you still on beta blocker, if yes which one and what dose
Not been on beta blockers for a long time.
so are you on gluten free diet or dairy free diet
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 with Hashimoto’s 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
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.
Similarly few months later consider trying dairy free too. Approx 50-60% Hashimoto’s patients find dairy free beneficial or essential
Hashimoto’s and leaky gut often occur together
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