Please can you help? Is this thyroid or something else? It was on here that I found out that my seemingly random symptoms were relate to thyroid and life improved immensely when I started on correct T3 and methylcobalamine. Now feeling dreadful again and I really hope you can help me work out where to go with this. The current plan is change my diet and wait for an endo appointment. I haven’t seen an endo for 2+ years due to continually having NHS cancel appointments.
Now been feeling really dreadful since March and not sure if the current random symptoms and blood results are again caused by thyroid or some other autoimmune condition or something else again. Just been told that bloods indicate I’m diabetic and not to eat sugar, bread and retest in 3 months. Cant say if the diabetic result is a symptom or a cause.
Currently taking T4 - 100, T3 - 45, Methylcobalamin - 1000 mcg
Other supplements really upset my stomach.
Attached bloods tested and retested (FT3 didn’t get done – going tomorrow for that):
Previous stool test marked No Action. More stool tests being submitted today.
March 2020 – Skin on hands peeled off and deep hacks, diagnosed as pompholyx tho no prescribed creams helped – intermittent since then.
Tooth broke and was removed – root had resorption. Another tooth broke this week.
March 2021 – Virus (Covid negative) exhaustion and migraines. Daily diarrhoea lasted 6 weeks.
Hair thin. Nails brittle. Dry skin on feet. Constant stomach issues.
Years ago had prolapses and had op - tapes (not mesh) fitted. Signs of minor prolapse again.
Struggling to upload a picture of the full blood count results. Will try to add in comments. May have to type them in comments. Please bear with and thanks in advance for any help.
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before the results appear, just a comment about the pompholyx.. there's a chat about it halfway down this post..healthunlocked.com/thyroidu...
I have it , and find Dermol 500 lotion , (from chemists) very helpful , even though it 'shouldn't ' work ... found it did by accident.
It doesn't stop it coming back , but it seems to be excellent at stopping the itching and healing the skin pretty much 'overnight'.
It was a continuous nuisance last year, but this year ...nothing at all (yet).
I've never worked out what makes it come or go... but there seem to be more people on this forum with it than would be expected if it had no relation to thyroid issues (i have found vague research references to it being related to autoimmune hypothyroidism , but nothing very specific about how/why.)
Ah I see. Thanks. The last 2 blood tests they didn't do FT3 so didn't think the thyroid bloods would mean much without that. Getting FT3 bloods done tomorrow. I have got TSH <0.05 m U/L (0.27 - 4.20) Free T4 16.8 pmol/L (12.0 - 22.0) Serum B12 410 pg/ml (197.0 - 771.0) Serum foliate 5.05 ng/ml (3.90 - 26.80) Serum ferritin 105 ng/mL (14.0 g186. 0)
Thanks. That gives me something to aim at. I don't really understand why my B12 isn't higher given the B12 supplements I take. Previously my B12 has been avove scale. Foliate supplements made me unwell before but will try again. Thanks again
Are you taking your B12 supplement on its own? All the B vits work together, so ideally, you should take a B complex with it - but avoid B complexes that contain vit C, because that can adversely affect B12.
It's one I get from Australia called Blackmores Rapimelt. Only ingredient is me cobalamin. 1000mcg tablet daily. After trying lots of others this one gave me a lot of energy. I will buy some B vitamins without C and try that with my rapi melt. Interesting what you say about the Vit C. I used to take supplements but couldn't tolerate them. Wondering now if that was because of the Vit B / Vit C combination
I had never questioned it but as you say there must be something else esp as its cherry flavour. I bought it while over there as had run out and it gave me energy so I stuck with it. Thanks for checking it out.
From the list of excipients given by helvella above, I notice that your supplement contains acacia and mannitol. These two ingredients often appear in prescribed medicines and supplements, and they cause problems for many people in terms of tolerance. Some can't tolerate acacia, some can't tolerate mannitol, but luckily it is not common for them both to appear in the same product. But you have the double whammy with both appearing in your B12 supplement, so I think you need to find a new supplement.
Mannitol was put into the standard Levo preparations used in France by Merck for their levothyroxine and it triggered thousands of people to demonstrate through the streets (of Paris?) about it because they were getting lots of their old symptoms back.
Both the above results show results that are too low for many of us with thyroid disease to feel well.
For the body to metabolise and make use of vitamin B12 people need good levels of folate.
Ideally serum vitamin B12 would be top of the range.
And optimal for folate is upper half of the reference range, i.e. approx 15 - 27 with the range you've given.
I would suggest that you need to supplement methylcobalamin at a higher dose than you have been doing to improve your B12. It is possible that you need as much as 5000mg per day to raise your results.
This is the sort of product I had in mind, although there are probably better ones around. :
As for folate, it is important not to get folate and folic acid confused - and folate is far better than folic acid. Did you know that folic acid is entirely artificial and was invented in 1943? Please read this :
While raising low levels of B12 and folate is very important it is also important not to ignore other B vitamins. Many of us take a B Complex all the time, and add B12 and folate only until results are optimal, then stop taking the separate B12 and folate and just keep taking the B Complex. If this means that B12 and folate drops again then you'll have to find a maintenance dose of the B12 and folate to keep them at a level that works for you.
B Complex products aren't all the same. Some of them have poorly absorbed cheap ingredients, while others contain B vitamins in their active form that the body can make use much more easily.
Two good products, often mentioned on the forum are Thorne Research Basic B, and Igennus Super B.
Note when comparing prices that the Thorne product dose is 1 per day and the Igennus product is 2 per day. Many of us start on 2 of the Igennus and after B12 and folate are optimal may be able to reduce dose to 1 a day to save money. But others prefer the Thorne product and take 1 per day permanently. It all depends on personal preference and how well you feel.
This is great information thank you. The Blackmore B12 I'm taking doesn't actually list any ingredients other than the active methylcobalamine so it could easily have something in it that doesn't agree with me. I hadn't even realised that there was no list of filler ingredients. I also hadn't known about excipients or realised that they could be the cause of so many issues so I will try options from these linked suggestions and hopefully find something that agrees better. Thanks too for the foliate info. Foliate was really difficult to find hence used Folic Acid instead and as I struggled with it I gave up. Will get better B12 and foliate ordered today. Thanks again. Appreciate it.
With the B12 that's the only active ingredient. Just had a look at the Folic Acid with Vit D and those are the only active ingredients but can see lots of bulking agents etc. When I previously took Vit C it was a separate tablet.
See what you mean. At the time I had ordered from Nutri and was taking their Vit C. Just realising that would have been when I was taking B12 in the cyanocobalamin form. I switched from cyano to methyl but not as part of a multi vitamin. At one point I was also taking Nutri adrenal extra support. Took it for a long time but stopped as wasn't sure it was good to take over a long period. Is there a good compound you would recommend to get the correct combination of vitamins?
No, there isn't. Multis are to be avoided like the plague - for all sorts of reasons. You sound only take what you need. And to know what you need you have to get nutrients tested and personalise your supplements. You also have to know what not to take together.
Good advice thanks. Will ask for vitamins to be tested tomorrow and will hopefully get a better picture of what's needed. Then will look at the advice here and make sure I make an informed decision about complementary supplements. Thanks again
Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
When on T3, day before test, split dose into three smaller doses roughly equal 8 hour intervals. Taking last dose T3 at roughly 8-12 hours before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you. I hadn't even picked up about no vit D result and had an issue with that in the past. Will ask them to test that with Free T3. Ive tried Folic Acid with Vit D and felt unwell. Was looking for foliate supplement with no success but perhaps I should have been looking into foods containing foliate? If my surgery doesn't test for your suggested ones I will get done privately but I think they will do it. They are as stumped as me and basically just hoping an endocrinologist can resolve. I did try asking before about thyroid antibody testing and have to admit that I don't know. I will get that confirmed tho as I need as many pieces of the jigsaw as possible. Thanks again. Meant to say. I do take my meds in the way you have here but as I only found out today about blood test in the am I am too late to split my T3
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