Hi everyone - long story cut short = a year long fight with my NHS GP (x5 appointments) and ordering x2 Thriva blood tests in desperation which showed the following on the last test
TSH = 7.2 (normal range 0.27- 4.2
FT4 = 15.4 (normal range 12-22)
FT3 = 5 (normal range 3.1 - 6.8)
Thyroid peroxidase antibodies = 390 (normal range 0-34) Eeeeeeeek.
T4 = 72 (normal range 66 - 181)
Thyroglobulin antibodies = 115 (normal range 0-115)
My NHS GP didn’t explain anything about the wild TPOAb range and didn’t seem bothered by it. She begrudgingly put me on 50mcg per day of thyroxine because of the raised TSH (it has been raised twice over two blood tests over 6 months) and told me to call back in 3 months for a review (I started on thyroxine 1/12/21)
All the reading I have done suggests I’ve got hashimotos and that removing gluten from my diet would be highly beneficial. I’m now doing that.
Question 1 - would removing gluten lower the TPOAb levels? If yes, how soon or long should I wait to test them again to see if it is having an effect? Three months? Six months?
Question 2: TPOAb range is sky high, so why is TgAB only at the high end of normal?
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lauraleeds666
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Because labs use different machines the ranges may also be different. That's why we ask for the ranges to be included in the blood test results.. If you do have the ranges, you can add them by pressing the down arrow next to 'More' and include and select edit.
I think I’ve done this now - I put in the range that the lab I used classes as normal, is that what you meant? Sorry, first time posting on this forum!
Don't worry - it is a big learning curve. and 'yes' you've entered them.
The following:-
TSH = 7.2 (normal range 0.27- 4.2
shows that your TSH is 'too high' as it is 7.2 and that you need small increases in dose as the aim (for us the patients) is to have a TSH of around 1 or lower.
TSH means 'thyroid stimulating hormone' and it rises when our thyroid gland is struggling to produce the hormones. We should have gradual increases in dose until the TSH is around 1 or lower.
Due to your having 'antibodies' this means that you have a condition called Hashimoto's as this is the commonest cause of dysfunctional thyroid glands as the antibodies attack the thyroid gland until we're hypothyroid. Going gluten-free can help reduce the antibodies.
I am not medically qualified but had to diagnose myelf after the GP phoned to tell me I had 'no problems' as my TSH was fine. He did not realise that a TSH of 100 was not 'fine' when we need our TSH around 1 or lower.
As Thyroiduk.org.uk was initiated by Lyn Mynott you can become a member, if you wish. The more members the stronger we are. She works in the background with her staff trying to change the attitudes of the Endocrinologists and GPs.
If your GP has not checked B12, Vit D, iron, ferritin and folate - everything has to be optimal - request these when your next blood test is due.
All blood tests for thyroid hormones have to be at the earliest possible. Doctors only look at the TSH result (it seems) and this means 'thyroid stimulating hormone' and the aim is to have it around 1.
Thank you. How come we are aiming for 1 or lower when the ‘normal’ range is up to 4.2? If 50mcg daily ends up helping with my symptoms (constipation and fatigue) should I stick with this dose or should the dose be based on the TSH levels?
Typically symptoms improve on initial dose, then after a few months symptoms can start to return as your body is needing next dose increase in levothyroxine
guidelines on dose levothyroxine by weight
Even if we frequently start on just 50mcg levothyroxine most people need to increase levothyroxine dose slowlyin 25mcg steps (retesting 6-8 weeks after each increase) until likely to eventually be on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Laura no point in retesting antibodies. They fluctuate. Antibodies are used to diagnose the cause of your thyroid problems which in this case is hashimotos. Do a search and read up on hashimotos as it will help you to understand what is going on with your body .
Ideally you would get coeliac blood test done BEFORE cutting gluten out
Approx 5% of Hashimoto’s patients are coeliac, a further 80% find strictly gluten free diet helps or is essential as it can significantly reduce symptoms
The antibodies are not the cause of autoimmune thyroid disease, they are the “hoovers” cleaning up after each attack……even if antibodies reduce to within range you will still have autoimmune thyroid disease
Some people only have high TPO antibodies, many have high TPO and high TG antibodies, significant minority only have high TG antibodies. 20% of Hashimoto’s patients never have high thyroid antibodies at all
Have you had vitamin D, folate, ferritin and B12 tested yet
If not request testing at next blood test
Thyroid levels should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Dose levothyroxine is increased slowly upwards in 25mcg steps until TSH is always below 2
Most important results are Ft4 and Ft3, aiming for at least 50% through range
Always test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Which brand of levothyroxine are you currently taking
Many people find different brands are not interchangeable
Once you work out which brand suits you best, try to always get same brand levothyroxine at each prescription
Yes I tested them myself through Thriva. Results are:
Ferritin = 72 (normal range 15-150)
Iron = 17.2 (normal range 5.8 - 34.5)
B12 = 73 (normal range 37.5 -150)
Vit D = 57 (normal range 50-200) However this was noted as “sufficient not optimal” by the Thriva report and I was encouraged to supplement.
I had a coeliac test done in March 2021 which was negative.
By brand do you mean the manufacturer? It is Accord by Almus Pharmaceuticals. How should I work out which brand suits me best if it is advisable not to swap about between brands? Is Accord considered to be a good one? I presume I just get given the brand that the pharmacist has in stock that day? That’s what happens with all other meds 😂
It’s always worth trying strictly gluten free diet with Hashimoto’s
Hashimoto's frequently 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 to 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 a further 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. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten 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.
I am just taking the Boots own brand Vitamin D 25mcg once daily tablet until after Xmas when I’ll have time to sit down and research properly what the best quality Vit D supplementation I can buy is. The Boots tablet is filled with a load of guff I’m not keen on but I thought it was best to start on something. You’ve saved me a job though - I’ll buy that spray. Ive read that there is a danger of taking too high a dose of Vit D - would you say that’s true or is that not really a top concern for hashis patients?
My NHS GP hasn’t even measured or mentioned my Vit D levels. It’s my Thriva test which alerted me to the fact they’re not optimum and then some of my own reading around how important Vit D is for autoimmune thyroid which made me start on the Boots tablets.
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
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)
Teva, or Aristo (100mcg only) are the only lactose free tablets
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
So as you are on Accord - when next dose increase needed up to 75mcg request GP increase number of 50mcg tablets and then cut in half to get 25mcg dose
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).
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
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
Thanks, this is super useful information. I’ll have a battle on my hands to keep to the same brand I’m sure but I’m prepared to fight it out. This is reminiscent to me of when all women in the country taking Cerazette where switched over to Cerelle - many of us had side effects and were repeatedly told that it was psychosomatic as it was the same active ingredient. I now buy Cerazette on a private prescription!
Yes, I already read about how it has to be taken on empty stomach at least a full hour before eating, drinking anything other than water and any medications/ supplements. I’ve been doing this since day one. Morning is easier for me than bedtime as the gap between tablet and breakfast doesn’t bother me at all. I’m taking Vit D, zinc, l-lysine and a broad spectrum probiotic on an evening.
Thyroid peroxidase antibodies = 390 (normal range 0-34) Eeeeeeeek.
The level of the antibodies is not a measure of the severity - or otherwise - of your disease. Over-range antibodies mean you have Hashi's, but that's all it means. Hashi's does not get worse or better, it just is. So, by all means go gluten-free if it helps with your symptoms - gluten can cause symptoms in some people - but it it doesn't help, and you're not gluten-sensitive, there's no point in eating gluten-free.
Yes the evidence is very contested isn’t it. I spent some time looking at the academic literature on Google Scholar - some studies find in favour of a gluten free diet for Hashis but others find no evidence to support it. It’s very confusing. The studies that find in favour of GF had their main finding as statistically significant reduced TSH levels in the intervention group and the authors propose a link between GF and increased absorption of thyroxine. But these studies do not note any stat sig reduce in thyroid antibodies. I think I will try GF for three months to see if I feel any better.
Always beware of studies that talk about reducing TSH and ignoring the thyroid hormones - FT4 and FT3. It's not about the TSH. And there's no point in reducing it if the FT3 doesn't rise accordingly. But, in gluten-sensitive people, eating gluten could reduce absorption of levo.
Hi Laura.edds666, Did you have symptoms which led you to believe you had a thyroid problem as I had similar results when first put on medication even though the intermittent heartbeats had disappeared before they started me on Levothyroxine even though that was my only symptom, after medication nothing changed at all.
Yes, I’ve had chronic constipation, bloating, crippling fatigue and weight gain for almost a year before I got put on thyroxine earlier this month. I actually did not connect it to thyroid. I was concerned I had something sinister gynaecologically going on and was even referred for an ultrasound to rule out ovarian cancer. I was in a lot of pain with the constipation as I was sometimes only going to the toilet once or twice a week (TMI, I know) I had a burst appendix in summer 2019 so any pain on the low right side makes me nervous for a subsequent bowel obstruction as I know there is a lot of scarring down there. I was going crazy with the fatigue. If I hadn’t got enough sleep I would be in pain all over my body and have brain fog the whole day. In desperation, I googled “private blood test” and found Thriva and then took it from there. Even though I was symptomatic, the NHS GP I spoke to in August said they don’t treat based on a one off blood test and that I would have to wait another three months and the TSH would have to be raised again before I could be put on treatment. Well, of course it was!
So I have been on thyroxine for 18 days.I was told I wouldn’t see any effects for 4-6 weeks. I have been to the toilet five out of the past seven days, which is life changing for me.
Yes, On looking back I am not completely sure I actually needed it as my GP put me on it without another blood test without any other symptoms. I have a theory in my case that adding Levothyroxine made my system think I was over producing T4 so reduced its own outputI am glad your symptoms are reducing..
My test results at the time of prescribing and the only ones were;
I have a theory in my case that adding Levothyroxine made my system think I was over producing T4 so reduced its own output
Well, of course it did. That's the way it works for everybody. The pituitary senses the extra hormone in the blood and reduces the output of TSH. The reduced TSH means that the thyroid hormone output was reduced. But with a TSH of over 7, you were hypo, and your poor thyroid was having to work very hard to make the amount of hormone it did. You are hypo when your TSH reaches 3. So, you weren't misdiagnosed and did need the levo.
With no symptoms, and only one thyroid blood test, protocol is for a further test to be carried out to see if the first result is replicated, as TSH can be elevated for reasons other than thyroid issues. If TSH continues to be above range, then a trial of replacement hormone can be commenced, but some doctors will just monitor until symptoms occur and/or FT4 drops below range. With no symptoms, and all thyroid levels within range, no treatment is needed. You could be right in thinking your diagnosis was a little too quick.
thyreoidea did you ever have thyroid antibodies tested ? TPOab (thyroid peroxidse antibodies)
... as Partner20 says, it is usual practice (and required by the current NHS guidelines) to retest a raised TSH a few months after the first one (to make sure it wasn't a 'one off' high TSH result caused by something else), BEFORE starting someone on levothyroxine.
If raised TPOab antibodies were found it would make your need for replacement thyroid hormone more certain than just one TSH of 7 does.
thyreoidea And are you certain that the GP didn't have a previous over range TSH on record, perhaps from a long while before and they may not have mentioned it to you ?
edit. it might be better to discuss this on a new post , your results/replies will get confused with lauraleeds666 results on this one , as she also had TSH of 7.
I checked my records going back to 2000, no mention or cause to check My thyroid and earliest TSH reading is in 2006. As regards a separate post I will do as you suggest but no hurry as I have been on Levothyroxine for over 15 years and hopefully not for nothing.
Q1 - going totally GF reduced mine completely. Back in 2013 I went into remission from Graves Disease but I still had lots of antibodies. Two years later I developed inflammatory arthritis which was yet another autoimmune condition so I decided enough was enough and went totally GF.
I didn’t find it difficult because I used to cook group lunches for about 30-40 people for a club I was a member of which included a couple of people who had coeliac disease and were GF. Rather than making them the odd ones out and messing about with food that some people had to avoid I decided the easiest way was just to make everything I cooked totally GF.
I also had a work friend who was coeliac and he had an amazing little book from CoeliacUK. It’s not really difficult to be completely GF , you do have to scrutinise the ingredients of everything you buy - certainly until you are used to it although if you cook from scratch like I do it’s much easier - stores will sneak gluten into the most amazing foods so you have to be careful.
Anyway, about three months after I started eating GF I tested my antibodies and they had decreased - of course once that happened I kept going and they just came down and down so I’ve been gluten free ever since. It has also done wonders for my IBS so it’s been a win, win situation. It’s hard to tell if my antibodies decreased because I went GF or because it was ‘their time’ but I wouldn’t go back to eating gluten even though I miss the odd thing.
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