Help with recent test results and Endo’s comments please.
I received an unexpected letter advising of a future telephone appointment with my current Endo, ( GP referred ) . I took the opportunity to send him a copy of my latest test results with Medichecks, something for us to discuss I thought. Together with the results I included a concise update on my current condition/symptoms and concerns with respect to dosage of thyroid medication and the Impact that poor Vitamin levels may be having on the absorption of said medication and conversion ratio’s. Needless to say it was a very quick telecon with dismissal of any requirement to supplement Vit D, B12 or that my T3 was low. Reluctant to give in I noted his team member suggesting my T4 might be better in the upper quartile and beyond within reason, thus improving T3 levels. Thankfully he agreed a thyroxin increase to 125mg a day and also a small supplement of Vit D 800IU, Vit B12 not needed ?, with further blood test in 8/10 weeks and another telephone appointment thereafter.
I have been taking BetterYou D3000+K2 oral spray and Jarrow Methyl B12 1000mg since. Test taken as per good practice, before 9am, no meds or food etc etc results enclosed.
Telecon went as follows:- Endo says we must reduce thyroxin to 125/100 alternate days as TSH is very very low - but I feel slightly better- dosent matter - what about my Vit levels , can you give me the test results with range please - they ok – I need the results so that I can quickly assess and comment – Results very quickly - but my Vit D has actually dropped and I’ve had a letter and tablets in the post from the Gov advising to supplement – ok we will increase to 1600IU retest in 8 weeks. I have stopped taking Vit B12 as it I think its affecting sleep, I intend to start taking Magnesium ( any suggestions ) do you think there would be any mileage in a pernicious anemia and or a Dio1 and Dio2 test ?. Sorry for length, your patience and advice is appreciated.
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Leccybill
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Thanks SD. I've had coeliac blood test and the GP said it was ok, I said why then is it abnormal and she said the Ttg was ok so not Coeliac. The Endo as included a line at the bottom of his letter and I have shown it bottom left of the test schedule. Not on GF diet as she said unlikely I would see any benefit although I know Izabella Wentz and many others on here will not agree with that. I always took Mercury but with changing dosage they have given me anything available so I have written to both GP and Pharmacy asking for Mercury only as I tend to fair better on that.
Not on GF diet as she said unlikely I would see any benefit although I know Izabella Wentz and many others on here will not agree with that
NHS are hopelessly out of date on gluten and Hashimoto’s….it’s ALWAYS Worth trying strictly gluten free diet
Also make see improvement in psoriasis and vitiligo on absolutely strictly gluten free diet
But get coeliac blood test done BEFORE considering cutting gluten out
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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. 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.
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. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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).
B vitamins best taken after breakfast
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
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
If you tend to suffer constipation, then Calm vitality magnesium powder is cheap and easy to use. Start on low dose, and increase cautiously…too much can cause diarrhoea
All magnesium must be minimum 4 hours away from levothyroxine
Magnesium generally best taken afternoon or evening as can help improve sleep
Other magnesium supplements
Igennus triple magnesium…again large capsules….can tip powder out
Never been diagnosed with Hashis or autoimmune thyroiditis, just says Primary Hypothyroidism. No Goiter either but do struggle swallowing ?. screenshot attached missed from last post.
Yes. Thankyou. I've been asking if these autoimmune conditions are all linked and if there is a common / specific condition that could be causing them ( GI for instance ) but the Endo or the GP hasn't offered any explanation or hypothesis, not even a guess at it.
I just want to point out for general information for everyone that some of those results don't need a percentage through range, for example
Vit D: there are categories - Deficient, Insufficient, Sufficient/Adequate and there are ranges for each category, different labs put slightly different ranges so it's not a case of aim for a percentage through range but aim for what is considered a good level so it's just the number that counts with Vit D.
The Vit D Society and Grassroots Health both recommend a level of 100-150nmol/L with Grassroots Health's recent blog post recommending at least 125nmol/L.
Depending on area the NHS might say that 50nmol/L requires no treatment just lifestyle advice unless thre are specific clinical indications, some say that 75nmol/L is optimal. Personally I prefer to go with what the Vit D Society/Grassroots Health suggest.
As you can see your NHS and Medichecks ranges are very different so it's pointless using percentages, you just can't compare so go by the actual Vit D level.
In the UK it's mostly nmol/L used as the unit of measurement and it has the higher ranges. If it was ng/ml the range is smaller - 30-100 and 40-60ng/ml is the recommended level.
TSH: it isn't worth working out percentages here either. Ranges differ but they don't matter anyway, primary hypothyroidism is only diagnosed when TSH goes over 10, secondary hypothyroidism is diagnosed when TSH is over range with raised antibodies. Apart from that, when on thyroid hormone replacement we know that low in range is better for most people and many of us have very low or suppressed TSH when on therapy. Plus, of course, as long as TSH is somewhere within range a doctor is happy regardless of how we feel
I hope you don't think I was nit-picking, just thought I'd point it out for any members reading who aren't familiar with this way of looking at results so they don't get it wrong when looking at Vit D and TSH in particular 😊
There's just no point really in some instances. If there are recommended/optimal levels known for certain vitamins I think it's easier to aim for those.
Vit D (as mentioned): 100-150nmol/L (or 40-60ng/ml) according to the Vit D Society and Grassroots Health
B12: minimum 550pg/ml (or ng/L) but better nearer 1000 according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Ferritin - percentages can be useful, but according to NICE below 30ug/L is confirmation of iron deficiency
Most of the GPs in my surgery play medical ping-pong.
Sadly most think the range is a ‘cup’ and that the patient is a ‘ping-pong ball’ and if they get the ping-pong ball in the cup they win a prize.
They simply do not understand that you can be on completely different doses at either end of the range and be hypo (at the lower end) and be optimal and well (at the upper end) OR, heaven forbid, because of other confounding factors you may sit outside the top of the range before you feel well. I had to argue case to a dose where I felt healthy because of this issue, but did get there 😊👍
BTW I had a GP tell me I was ‘normal’ on 75ug of Levothyroxine even though I felt like (you know) having never set eyes on me before. She couldn’t get her head round the fact I was ‘in range’ and still had symptoms.
I have a friend who is on 75ug and doing really well she is 4’11”” and 6 1/2 stone 🧚♀️
Thats great, thankyou. So as the calculator defaulted to 100 nmol/l I can conclude that that would be a good level ?. Its interesting because I have been taking Betteryou 3000+K2 daily for a few months now and I had 3 weeks in the sun prior to my last test whereby my D3 had reduced, although the range the Endo gave me during the telecon is somewhat different than the Medichecks. I deduce from this my Vitiligo is impacting Vit D intake from the sun, you would think the Endo would advise on this.
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