RESPONSE TO JAZZ W, SLOW DRAGON, BATTY1, TEREBOL - Thyroid UK

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RESPONSE TO JAZZ W, SLOW DRAGON, BATTY1, TEREBOL

10 Replies

I'm sorry it has taken a while to get back to you but I had to go online and look up dates of myT3/T4 tests...and it's the weekend...and blah blah blah. Anyway, THANK YOU for the great information (especially you, Slow Dragon) and the questions you all asked. The last time I had my T3 and T4 tested was in April of 2021. For T3, the normal range here is 2.3 - 4.1. For the last 10 tests the results ranged from 2.3 - 2.9. For T4, the normal range is .9 - 1.7 and the last 10 test results ranged from 1.3 - 1.7. All my endos (they seem to retire or move on so I've had a few) have told me that I do not have Hashimoto's just an underproductive thyroid. (little familial history: Mom had hypo and had 13 nodules removed - non-cancerous - if that means anything). Oddly, my father tested low thyroid at the age of 86! And in retrospect I think they both may have had a B12 deficiency and didn't know it. As I said in my first post, meds did a pretty good job keeping me regulated until diagnosed with AAG and PA almost two years ago. The last endo said she thought the varied test results over a short period of time was because my stomach was/is most likely not absorbing the Synthroid properly since my stomach lining is being eaten away by my antibodies. I do not inject B12 - I take a high dosage sublingual daily (1000 mcg). I was unable to take the shots - it made me that sick. My neurological symptoms have been, in part, numb toes, foggy head, aphasia now and then, and fatigue. I know some of these things can also be caused by underactive thyroid. I was hoping to learn from this forum more about the relationship between PA and Thyroid disease - and Slow Dragon, you may have offered info on that in your post but I haven't gotten that far. Thanks again everyone, this group is super - just like my PA forum...

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helvella profile image
helvellaAdministratorThyroid UK

If you want to draw the attention of specific members, it is best to "mention" or "call out" to them.

Type "@" (or click on the @ symbol along the bottom of the box your are typing into).

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Otherwise, you are relying on those members noticing your post. And it is very easy to miss posts.

Jazzw SlowDragon Batty1 terebol

in reply to helvella

Thank you! I never knew that. Very helpful.

SlowDragon profile image
SlowDragonAdministrator

Can you get FULL Thyroid and vitamin testing done yourself

TSH, Ft4 and ft3 plus BOTH TPO and TG thyroid antibodies

Ultrasound scan of thyroid can be helpful

Plus vitamin D, folate, ferritin and B12

Always test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

in reply to SlowDragon

I have copied this info and will talk to my nurse practitioner. Thank you.

humanbean profile image
humanbean

I do not inject B12 - I take a high dosage sublingual daily (1000 mcg). I was unable to take the shots - it made me that sick.

When someone is low in B12 it reduces the number of red blood cells their bodies can create. When the patient gets some vitamin B12 by injection or supplementation the body will go into a frenzy of making new red blood cells. But red blood cells have more ingredients than just B12. Making red blood cells uses up potassium too.

web.archive.org/web/2019030...

From the above link:

"Treatment with vitamin B12 leads to the production of new erythrocytes, which results in an intracellular influx of potassium. This may produce severe hypokalemia, which requires monitoring and appropriate treatment."

Note : Erythrocytes are red blood cells. Hypokalemia is the medical name for low potassium.

Low potassium will make taking B12 unpleasant for some people. Potassium is one of the most important electrolytes in the body and disturbances in the level of potassium can make people feel very unwell. So you have two choices - start eating a diet that includes more potassium rich foods or supplement.

For the body to make full use of the B12 it receives you must have adequate levels of folate too. Many people probably fulfil this requirement by taking folic acid, but that is not the best way of supplementing folate.

From the above link:

Treating concomitant deficiencies

If there is concomitant vitamin B12 and folic acid deficiency then vitamin B12 must be started first to avoid precipitating subacute combined degeneration of the spinal cord. In patients with isolated vitamin B12 deficiency and anaemia, additional folic acid supplementation is recommended until vitamin B12 is replete, to prevent subsequent folate deficiency after replenishment of B12 stores.7 12 23 24 Iron deficiency can be treated with oral ferrous sulphate (or suitable alternative) 200 mg three times daily with vitamin C supplementation. If this is not tolerated or effective then referral to a specialist may be required.

The best ways of supplementing folate are described in these two links:

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

...

There are also other nutrients that are essential :

healthline.com/health/how-t...

healthyeating.sfgate.com/nu...

Several of the links I found about the making of red blood cells mention copper as being essential. But I wouldn't suggest supplementing copper unless you have tested it and found your level to be low. I don't know why, but people with thyroid disease tend to have high levels of copper and low levels of zinc. Copper and zinc are "on a see-saw" - so if one goes up the other goes down. I've only come across one member on the forum who had genetic problems with copper and had low copper and high zinc.

humanbean profile image
humanbean in reply to humanbean

I forgot to say, once red blood cell numbers have reached maximum the need for extra potassium should disappear.

in reply to humanbean

Thanks for all the great info. I have copied and pasted to my computer to use for future doc appointment.

Clarrisa profile image
Clarrisa

My Endocrinologist felt I developed a Synthroid absorption problem too. She trialed me on Tirosint. In the mean time I went gluten free. After a while I began to lose too much weight on Tirosint so ended up taking a mixture of both Tirosint and Synthroid under Endocrinologist management (based on my experience I do not recommend taking both together at all, I got out of kilter). Weight loss continued so dropped Tirosint remaining on Synthroid. I have been going OK on Synthroid since. I believe going gluten free repaired my gut enough for it to now absorb Synthroid adequately.

in reply to Clarrisa

thank you, Clarrisa. this information will be helpful when next I see my doctor.

SlowDragon profile image
SlowDragonAdministrator in reply to Clarrisa

Huge numbers of thyroid patients find gluten free diet helps or is essential

Often dairy free can help too

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