Is there an optimum level that our TPO antibodies need to be at, when it's considered that our autoimmune reaction is not so high? At diagnosis over 4 years ago, my TPO level was 365. In March 2021, it was 121 and recently was 94.
My functional doctor wants my level to come down further before prescribing LDN, so she's focusing on repairing my gut first.
Many thanks for any thoughts and guidance.
just read your extremely helpful and detailed profile
Unbelievable incompetence of medics ….ferritin 13 and breathlessness…..yet no connection made
No results on profile after 2019
What are your most recent thyroid and vitamin results?
Aiming for ferritin nearer 100
Recommend you need full iron panel test for anaemia including ferritin if not been done in last 4-6 months
Hi SlowDragon,Many thanks for your reply. Ironically, when my ferritin was that low many years ago I didn't have the breathlessness on exertion. It was only when the hashimoto's was triggered after having the parvo virus 5 years ago that I became breathless on exertion, with muscle weakness. It was like the virus had never left.
I've worked on my ferritin level and in April last year, it was 136 (13-150) and later in the year with Medichecks, was 161 (13-150).
I was so convinced that my ongoing symptoms must be iron related, so I requested an iron panel through Medichecks in June 2022 but all seemed ok -
Iron 22.7 (5.8 - 34.5)
TIBC 67.5 (45 - 81)
UIBC 44.8 (24.2 - 70.1)
Transferrin saturation 33.7 (20 - 50)
CRP HS 0.58 (0 - 5)
My folate in April 2022 was 20 (4 - 27). I take methylfolate most days and the other b vitamins once a week.
I continue to self inject B12. D3/K2/magnesium regularly.
Thyroid results November 2022 -
TSH 0.15 (0.27 - 4.2)
FT3 5.5 (3.1 - 6.8)
FT4 17.8 (12 - 22)
I'm on 75mcg levothyroxine and 10mcg liothyronine daily.
Because of the ongoing symptoms, I was keen to see a functional doctor (the first one I saw didn't help much, except for adrenal supplements) and she has treated the viral load like I am in the acute stage of a virus.
The OAT test showed slightly low folate and slightly low B12 as a result (I wasn't taking enough folate at that point). A stool sample showed low results on lots of gut bacteria, so I've been given supplements and probiotics for that.
perhaps try SMALL increase in levothyroxine
FT4: 17.8 pmol/l (Range 12 - 22)
Ft4 is only 58.00% through range
FT3: 5.5 pmol/l (Range 3.1 - 6.8)
Ft3 is 64.86% through range
Perhaps 87.5mcg 2days a week 75mcg 5 days
Which brand of levothyroxine are you currently taking
Retest in 6-8 weeks
Many thanks SlowDragon. I'm taking Teva and I think that's the brand that has always been dispensed.
I would suggest trying a different brand …..unless you are lactose intolerant
Teva brand levothyroxine upsets many many people
Teva is only brand that makes 75mcg tablets
So would need new prescription
Teva contains mannitol as a filler, which seems to be possible cause of problems. 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.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription
healthunlocked.com/thyroidu...
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Hi SlowDragon, many thanks for your very helpful and detailed reply. Unfortunately, I didn't receive a further notification to update me about your reply. That's really useful to know about the different brands.
which brand is T3
It's Morningside. My surgery called earlier in the year to ask if I would consider T3 capsules. I guess they must be cheaper but I've not received a change with my last prescription.
Depends what size tablets you get
20mcg tablets would be much cheaper than 2 x 5mcg capsules
Cutting to give 2 x 10mcg or 4 x 5mcg
Current prices here
may I ask how you increased ferritin please? I’ve always struggled with mine. Thank you.
Hi CornishChick, I think it was Gentle Iron by Solgar but I also try and raise my levels by eating liver regularly.
post here discussing ferritin
Are you hypothyroid?
Do you have a T4 to T3 conversion problem?
Are you medicated with levothyroxine? This can very slowly reduce TPO level but not enough to avoid Hashimoto's
pubmed.ncbi.nlm.nih.gov/186...
The “normal” reference range for TPO antibodies is less than 35 IU/mL. But a 2016 study published in the Journal of Hormone and Metabolic Research found: Those who had TPO antibodies below 500 IU/mL had a low risk of future progression to hypothyroidism.
What are your symptoms?
Have these also been diagnosed as Fibromyalgia and has LDN been suggested by your Functional doctor as a painkiller?
How does your medic intend to heal your gut?
I don't understand where this medic is coming from and why she is considering LDN unless she suspects your problem involves GI disorders and diseases which LDN is reported to have the potential to help restore.....and which, in your case, there is no clear evidence that these exist.
Based on thyroid antibodies tests has she diagnosed Hashimoto's/ thyroid autoimmune disease?
Hashimoto's thyroiditis can cause your thyroid to not make enough thyroid hormone. It is an autoimmune disease. It occurs when your body makes antibodies that attack the cells in your thyroid. Symptoms may include an enlarged thyroid gland (goiter), tiredness, weight gain, and muscle weakness.
A gluten free diet helps many with Hashi's
Have you been supplementing with Vit D to optimise level... this may have a beneficial effect on autoimmunity as evidence by significant reductions in TPO-Ab titers.
Your TPO levels have reduced from 365 to 94 but still indicate Hashi's
I suggest you need to have a full thyroid test
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies TPO and Tg.
I suspect TPO is basically a red herring and that your thyroid hormone levels are the problem....particularly FT3.
I suggest you investigate this
Do not allow medication to be based on TSH levels ...science proves this to be an unreliable marker. FT3 followed by FT4 are the important markers
thyroidpatients.ca/2021/07/...
T3 is the active thyroid hormone ...and must reach the nuclei of the cells to become active. If cellular T3 is inadequate we suffer!
I doubt "repairing your gut" is the entire solution
Just a few thoughts... I'm not a medic just another patient who has had to learn in order to improve very poor thyroid health.
Hi DippyDame and many thanks for your reply. I was diagnosed with hypothyroidism and hashimoto's 5 years ago and was initially treated with levothyroxine. As it was found that I don't convert well (high reverse T3), I was also also prescribed levothyroxine at 10mcg daily. I have the DIO2 gene defect. I continue to be on 75mcg thyroxine daily.The parvo virus 5 years ago had triggered the hashimoto's and left me with breathlessness on exertion and muscle weakness, plus the usual hypothyroidism symptoms.
I self inject b12, take methylfolate, D3/K2/magnesium. I've added in fairly recent results in my reply to SlowDragon.
I don't have fibromyalgia, just the muscle weakness. The functional doctor didn't clarify what symptom she thought would be helped with LDN. She talked me through the need to regularly monitor my thyroid levels once I was on it but was keen to also have a clinical review with her two colleagues, as the gut supplements hadn't improved my fatigue. The review outcome was that LDN should not be started as it might flare up my hashimoto's and increase inflammation.
I'm to continue with the gut repair (probiotics and prebiotics were prescribed in July last year) and now she has added a Mito Complex, which includes a better form of B2 and B3, plus coenzyme q10 (which I've never tried before), ribose and NAC.
I feel that a carrot was dangled in being offered the LDN and now withdrawn. I had hoped that it would help the muscle weakness, at least.
The functional doctor had also been helping me with food intolerances, as I had lots of reactions after having covid and after the covid booster a year ago. I had regular symptoms of itching, indigestion, insomnia and heartburn from many foods, which I was ok with before the booster. Even carrots gave me insomnia. She prescribed antihistamines and DAO for the food intolerances and the reactions have settled down a lot in the last 4 months.
I've been gluten free for a number of years and, because of the food intolerances, dairy free for some months.
Does your functional doctor know anything about thyroid antibodies? As far as I am aware they fluctuate naturally over many many years and there's nothing you can do to change that.
She's part of a clinic, with two other functional doctors and looking at their profiles, I don't think any of them have specialised in thyroid disease. My functional doctor is a SIBO specialist and one of the others has an interest in nutrition and autoimmune. I'm not surprised that my TPO antibodies have reduced over the years, as now I'm not so low in b12 and other vitamins. But, there definitely doesn't seem to be a correlation between the severity of symptoms and the TPO level. My main symptoms of muscle weakness and breathlessness on exertion are definitely still there.
Low vitamin levels have nothing to do with any antibodies. That's caused by low stomach acid causing malabsorption.
LDN can be bought with private prescription from a chemist in Glasgow (they provide the doctor to prescribe), also one of the private chemists on Thyroid UK has started prescribing it.
I just correlated it to vitamin d in particular supporting the thyroid and reducing the inflammation and autoimmune reaction in general.Could you send me the link for the LDN please? Many thanks.
Message sent. 🙂
Many thanks Jaydee 😁
I’ve been successfully taking LDN for several years with raised antibodies. Feel free to pm for details.
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