Think I need a sleuth?

[veecaa]

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):

Highlighted findings

Neutrophil count 1.5 x10*9/L <2.0 – 7.5> retested 1 month = 1.6

Serum Creatinine 48 umol/L <60-110>

Plasma glucose 7.6 mmol/L <3.0 – 6.0 >

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.

[tattybogle]

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.)

[veecaa in reply to tattybogle]

Appreciate the top. Thank you. Had given up with prescribed creams as it made it worse but will give this a go. Cheers!

[greygoose]

Very difficult to read those results, but I can't see anything that relates to thyroid.

I would say that all your symptoms are, or could be due to hypo.

[veecaa in reply to greygoose]

Hi. Really sorry. Struggled to upload the results here. Appreciate you checking and your thoughts

[greygoose in reply to veecaa]

Well, if you have anything for TSH, FT4, FT3, antibodies or nutrients, it would be best to type them out. The rest won't mean much to anybody, anyway.

[veecaa in reply to greygoose]

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)

[greygoose in reply to veecaa]

You're right. As you're taking T3, the TSH and FT4 tell us nothing much at all.

I would want my B12 higher than that - at least 550. And the folate in double figures. Ferritin looks good.

[veecaa in reply to greygoose]

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

[greygoose in reply to veecaa]

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.

How much B12 are you taking?

[veecaa in reply to greygoose]

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

[helvella Administrator in reply to veecaa]

Not sure what you mean by saying "Only ingredient is me cobalamin". True that the only active ingredient is me cobalamin. But ...

Other Ingredients (Excipients)

Acacia

acetic acid

benzaldehyde

Cherry

Clary Oil

Clove Bud Oil

croscarmellose sodium

methyl acetate

magnesium stearate

maltol

mannitol

Orris Root Oil

silicon dioxide

Tangerine Oil Coldpressed

vanillin

Viola odorata

ebs.tga.gov.au/servlet/xmlm...

[veecaa in reply to helvella]

Good point. I checked the whole box and no other ingredients listed

[veecaa in reply to veecaa]

Ingred panel

[helvella Administrator in reply to veecaa]

Yes - I do believe you!

Absolute rubbish legal system which allows that or, if not allowed, leaves them getting away with it.

[veecaa in reply to helvella]

I definitely need to do more research in this. It's carried in major pharmacies so just assumed it was within regs

[helvella Administrator in reply to veecaa]

I looked at some listings and they did not list excipients. Why is why I went to an Australian government site.

1,000 micrograms is absolutely tiny - sort of grain of sugar size. So there simply MUST be other ingredients.

[veecaa in reply to helvella]

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.

[humanbean in reply to helvella]

veecaa

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.

connexionfrance.com/French-...

...

Serum B12 410 pg/ml (197.0 - 771.0)

Serum folate 5.05 ng/ml (3.90 - 26.80)

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. :

amazon.co.uk/Strength-Methy...

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 :

chriskresser.com/folate-vs-...

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.

[humanbean in reply to humanbean]

I've just read a much better post on the subject of supplements from SeasideSusie which you can find here :

healthunlocked.com/thyroidu...

[veecaa in reply to humanbean]

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.

[greygoose in reply to veecaa]

Were you taking a multi-vit? All sorts of things could have disagreed with you in a multi-vit!

[veecaa in reply to greygoose]

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.

[greygoose in reply to veecaa]

Yes, but you said: I used to take supplements but couldn't tolerate them. Wondering now if that was because of the Vit B / Vit C combination

So, I was wondering what those supplements were, and if it was a multi-vit.

[veecaa in reply to greygoose]

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?

[greygoose in reply to veecaa]

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.

[veecaa in reply to greygoose]

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

[greygoose in reply to veecaa]

You're welcome.

[SlowDragon Ambassador]

Need Vitamin D tested

Test TSH, Ft4 and Ft3 together

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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

What folate supplements have you tried....

Folic acid or folate?

[veecaa in reply to SlowDragon]

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

[humanbean in reply to veecaa]

Just wanted to point out that it's "folate" not "foliate".

[veecaa in reply to humanbean]

Cheers. My phone keeps auto correcting from folate to foliate!