Thanks to all the advice on here: I think I'm... - Thyroid UK

Thyroid UK

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Thanks to all the advice on here

bikebabe profile image
10 Replies

I think I'm getting to a better place - many thanks to all the people giving advice given on here. My meds/supplements include: 100mcg levo, 10mcg liothyronine (which i might increase to 15 mcg), vit b12/folate lozenge), vit D/k2 spray, glucosamine/chondroitin, calcium), new heart meds (disopyramide/nebivolol) and the cancer meds. I recently experienced a stepwise worsening of extreme fatigue and breathlessness due i think to the recent new heart meds as scans all stable. My blood results for thyroid seem reasonably ok (TSH a bit low) due to all the helpful advice I have received on this site so a big thank you. Is there anything else i should do? I don't take magnesium but have a good balanced diet with green veg, pulses, bit of meat, lots of berries, calcium etc.

Free t4 19.1 (12-22)

Free t3 5.0 (3.1-6.8)

TSH 0.225 (0.27-4.2)

B12 150 (35 ->150)

Total B12 377 (197-771)

Folate 12.8 (8.83-30)

Ferritin 100 (44-150 -July)

Vit D 124.5 (50-200 - July)

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bikebabe
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greygoose profile image
greygoose

Your B12 is much too low. But just taking two B vits in isolation isn't going to help much - how much B12 is in them, by the way? If you're supplementing B12 - methylcobalamin - you need to take a B complex with it to keep the Bs balanced, because they all work together.

And if you're taking vit D, you absolutely need to take magnesium because the two work together. And taking vit D without magnesium will deplete your magnesium. And it doesn't matter how good your diet is, the reason you have deficiencies in the first place is that you aren't absorbing nutrients. You more than likely have low stomach acid - most hypos do - and cannot digest your food correctly. So, best to take some magnesium, too. :)

Why are you taking calcium?

bikebabe profile image
bikebabe in reply to greygoose

Aieee …. and thank you. Calcium for bone strengthening (along with denosumab and Letrozole for stage 4 breast cancer). When would I fit the magnesium in - I thought I could eat enough of it - can that be taken with calcium? I tried a b complex (Thorne b basic) and was getting very odd symptoms ie my sweat smelt of urea especially at night and I really didn’t feel right maybe cos my kidney function is bumping along on the bottom of normal range ie egfr /potassium. Ive been having jarrow v12/ folate for >5 weeks with no bad effects.

bikebabe profile image
bikebabe in reply to bikebabe

Also - that Thorne complex had extremely high levels of a lot of b vits especially niacin compared to other brands and no longer seems to be available via Amazon.

greygoose profile image
greygoose in reply to bikebabe

Calcium for bone strengthening

Well, it won't do that. It'll just make them brittle - that is if it even ever gets into the bones! Calcium supplements are very badly absorbed and tend to build up in the soft tissues, arteries and kidneys. So, if you've got kidney problems calcium supplements are a very bad thing to take.

Besides, if you take vit D, it increases absorption of calcium from food. Which is why we take vit K2 with it, because the K2 guides the calcium into the bones and teeth.

When did you last have your calcium tested? Excess calcium is a very bad thing to have. So, if I were you, I'd drop the calcium and take magnesium in stead. Magnesium is far more important for bones, anyway.

When would I fit the magnesium in - I thought I could eat enough of it

Difficult. Firstly because of poor digestion/absorption due to low stomach acid. Secondly because soils are depleted of magnesium so there's not much in our food - the majority of people are low in magnesium.

Thorne basic B is not the only good B complex. Have you tried Igennus?

Ive been having jarrow v12/ folate for >5 weeks with no bad effects.

Well, no, it's not going to make your leg drop of or your ears turn blue. I wasn't suggesting it would cause bad effects, but no good ones, either. Bit like making a cake and forgetting the eggs. These things need each other for a complete working whole.

bikebabe profile image
bikebabe in reply to greygoose

Hello GreyGoose

I will try igennus. Thank you. The Calcium/vit d lozenges have been prescribed by Christie cancer docs for 2 years. My blood calcium levels teeter just above the bottom of range ie 2.2 (adjusted). That’s because denosumab stops bone breaking down as i have widespread micrometastatic cancer in my spine and without which the cancer would eat my spine up and increase blood levels of calcium too much. Denosumab prevents this so calcium levels fall in blood and need supplements to ensure adequate amount for adequate physiological functions.

bikebabe profile image
bikebabe in reply to bikebabe

And that is why the calcium is challenging with the thyroid meds. Also why I can’t take calcium channel blockers from r improved cardiac function hence the disopyramide.

bikebabe profile image
bikebabe in reply to bikebabe

*for improved cardiac function

greygoose profile image
greygoose in reply to bikebabe

OK, but do be careful. :)

Calcium and vit D - and magnesium as well - should be taken at least four hours away from thyroid hormones.

shaws profile image
shawsAdministrator

I would also ask if they will test for Pernicious Anaemia..

Ask if you can have a blood test for B12. If it is low then you should be given an injection of B12 - my GP is agreeable to me having a monthly jab instead of the quarterly one I used to get.

I have Pernicious Anaemia. It is one of my conditions but my (good) GP said I can have as many B12 injections I think I need, so I have one monthly. I also have hypothyroidism so am very foortunate to be prescribed T3 replacements as levothyroxine caused me to have severe palpitations. My GP is good and helpful.

bikebabe profile image
bikebabe

Thanks Shaws, thinking i might have PA because of blood results (MCHC, Haematocrit etc) etc I asked GP for B12 blood test 6 weeks after taking oral B12/folate in case i wasnt absorbing. I checked when got notification of referral that it def.included B12 but it wasn't ever tested. The GP who fed back whole blood test results said she wasnt happy duplicating blood tests with tertiary provider and im now left with 3 mthly blood tests relevant to the cancer and that provider don't /wont measure thyroid or vitamin levels or impact of new heart meds as its not their primary interest. It all costs money that's why and each provider is desperately trying to cut costs and shove costs elsewhere. So i did my own b12 test and thought because it was ok because of improvement in both serum and active B12 levels (71.6 to 150 active b12 and 235 to >350 serum/total B12. Apparently Thriva cant measure serum B12 above 350. Thuoght i was ok but Greygoose says not high enough so i don't really know what to do now. Pretty sure GP wont do anything on these results!

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