I have had concerns about my thyroid since my PT suggested I have many of the symptoms. I did a private test which came back as me having a TSH of 26 mU/L. I contacted the doctor and finally got to see him on Thursday. This led to blood tests Friday and through the night the results came through. Everything looks ok except for my Thyroid Peroxidase Antibody which is 1300 iu/ml. I’m assuming this is not good given the normal range of 0-60. My thyroid is also slightly swollen. Of course my mind is now working overtime so just wondered if any one had any advice. Of course I will be speaking to my doctor on Monday.
Thank you
Sara x
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Saralouise67
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Your raised TPO antibodies confirm autoimmune thyroid disease, known to patients as Hashimoto's. This is where the immune system attacks and gradually destroys the thyroid and it is the most common cause of hypothyroidism.
If your TSH was over range at the time of your raised antibodies then you should get a diagnosis of hypothyroidism and a prescription for Levo.
Fluctuations in symptoms and test results are common with Hashi's.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
Thanks so much for all that info. I will definitely investigate the gluten free thing as I do suffer with stomach problems especially acid reflux so I suppose that could be connected ?Thanks again.
Hi, Thank you for your reply. All really great advice ! My TSH on the GP test was 11.32. Hoping I will get to speak to him on Monday but will definitely do my own research as well.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Request GP test vitamin levels and coeliac blood test now BEFORE considering trial on strictly gluten free diet
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 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.
You said your test showed a TSH of 26 ( private test) so your blood test at your GPS showed your thyroid hormones were all OK apart from your antibodies, as seasideSusie noted you show autoimmune thyroid disease, mine was overactive hyperthyroidism ( graves) 2018, which is also autoimmune, I'm sure your gp can't say everything is OK when your antibodies are over range.
It took my surgery over 12 months to finally Diagnose me, my gp insisted my thyroid was fine, I'd had short suppressed TSH on some blood tests with thyroiditis ( I didn't know this, found it in my records in 2020 ) but when I was rushed into hospital in thyroid storm I spoke to a lovely doctor, who said because you have an autoimmune thyroid condition you were attacking your thyroid and in some instances you can stop attacking it making your thyroid hormones go bk into range, that is why it's very important to have thyroid function blood tests done ever 6/8 weeks to see what is going on.. Unfortunately for me my surgery did not do this.. I lost my thyroid in 2019.. So make sure you have thyroid blood done over a certain period to check what your TSH, T3, T4 are doing.. Best of luck.. ❤️👍👍
So I have spoken to the doctors receptionist today and it appears that they are going to leave things as they are and retest I. 6-8 weeks ? Does that sound right considering how crap I feel ?Sara
Usually they want two abnormal TSH tests for diagnosis so that they can rule out non-thyroidal illness. However, your very high antibodies confirm Hashi's but if they are going by guidelines then your TSH needs to be over range at the same time.
Do you have an NHS with over range TSH?
What was tested when this antibody test was done?
If TSH was over range at the same time as raised antibodies then this should give you a diagnosis.
Thank you so much for taking the time to reply again.
My initial results from Medichecks where:
TSH - 26 mU/L
FREE T3 - 4.28pmol/L
FREE THYROXINE - 12.3 pmol/L
This was from a finger prick test, first thing in the morning before any food etc.
My results from NHS test where
THYROID PEROXIDASE ANTIBODY - >1,300 iu/ml
TSH - 11.32 m/U/L
FREE T4 - 12.1 pmol/L
This was a venus draw 7.15 pm after a full day of food, drink etc. No mention was made of not eating, drinking etc.
The other things tested where serum sodium, serum potassium, serum creatine, estimated GSR, Liver function, Bone profile, full blood count, ESR & HBA1C. All of these came back as within normal ranges as far as I can see.
I have today been given an appointment in just over 2 weeks for a scan on my thyroid as it's swollen.
I should also add that I looked at the test results on the doctors online portal and he has actually put "bloods look like Hashimoto's"
Thanks so much for your help, I feel a bit confused by it all to be honest.
I really do not think they have any reason whatsoever to delay treatment.
Your NHS results alone confirm Hashi's, which was mentioned by the doctor's comment, and you have the extremely high Medichecks TSH result to back this up. To keep you hanging on any longer is just prolonging the agony for you.
The thyroid scan will undoubtedly confirm Hashi's too.
I don't know how you can persuade your doctor to prescribe now rather than later, I have no doubt that another doctor could well have started you on Levo by now, some members here report being diagnosed/treated with just an over range, but not over 10, TSH result, so I just think that you are very unfortunate that your doctor is procrastinating like this.
I believe the squeaky wheel gets the oil, so maybe make a nuisance of yourself, keep contacting them and asking to speak to the GP, or write in, list your symptoms, harp on about your results, ask why they are making you wait when your results so obviously point to Hashi's and definitely point out that the doctor's remark also considers Hashi's is a problem. Ask the GP if this was their partner would they make them suffer and wait for treatment. I don't care what I say any more (too many years of being fobbed off) but I always keep it polite.
I don't have a link which says your results should prompt the prescribing of Levo but maybe SlowDragon has something saved that I don't.
Standard starter dose of levothyroxine is 50mcg, don’t accept less. If they offer higher starting dose ….grab it (even if you initially start on 50mcg for few weeks
If GP still refuses, Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
Hi again ! So spoke to another doctor at the same practice and he seemed to be leaning towards a prescription for levothyroxine but wouldn’t commit ! But he is going to write to the endocrinologist at our local hospital and ask them their opinion. He says they normally get a reply back with 3-5 working days. So fingers crossed for a quick, positive reply.
that result is inside the 'normal' range. 'normal' is anything < 0.56 ('less than' 0.56)
your result is less than 0.10 ie (less than the test can measure )... so it's normal .
a result higher than 0.56 would be outside of range.
TSI is a test for the stimulating autoimmune antibodies that cause the thyroid to make high T4 / T3 levels in graves hyperthyroidism . ( and consequently , a low TSH)
It's not clear why they would have bothered tested you for these, as you clearly have hashimoto's and are hypothyroid.. not hyperthyroid.
Hi all,Well I have finally had a positive call from my doctors ! They have had a reply from the hospitals endocrinologist and he advised that I Ought to be started on medication. So I should be able to collect my prescription for 50mg of Levothyroxine later today and get started tomorrow. Just hope this starts getting me back to normal, well nearly normal 😀 I don’t think I would have been so happy pushing for this if it hadn’t been for all the help on here so thank you 🙏
Unless you are lactose intolerant, best to avoid Teva brand levothyroxine (certainly as your first brand of levothyroxine)
Standard STARTER dose levothyroxine is 50mcg
Take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Many people take levothyroxine waking, but it may be more convenient and possibly more effective to take at bedtime
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
ALWAYS book early morning test, ideally just before 9am and last dose levothyroxine 24 hours before test
Levothyroxine isn’t like aspirin, you won’t see immediate improvements….likely to not notice anything much until 2-3 weeks after starting…..then should start seeing improvements………then as you near 6-8 weeks common for symptoms to start to return……this is good indicator that you’re ready for next dose increase in levothyroxine
Many people find different brands levothyroxine are not interchangeable
Generally most easily available and tolerated are
Mercury Pharma - make 25mcg, 50mcg and 100mcg
Accord - only make 50mcg and 100mcg
Accord also boxed as Almus via Boots or Northstar via Lloyds
Beware Northstar 25mcg is Teva
GP should test vitamin D, folate, ferritin and B12 NOW
And coeliac blood test BEFORE you start on trialing gluten free diet
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