Another test with different results

[Apples]

I posted this in reply to myself....um probably not the best place! So am re posting as a fresh post.

I wondered if there was anything else I should be doing whilst struggling with my GP.

My GP explained that FT3 and FT4 didn’t matter, that doing blood tests could suggest problems which aren’t really problems and suggested I could self refer for talking therapy if I thought it would help.

Things got a bit busy and I retested using Monitor my Health, mostly because Slow Dragon pointed out that I should know my Vit B and D levels.

So, having stuck to the early morning, fasting test with at least 24hrs from my last dose my results were.

HB 136g/L

Ferritin 46 ug/L

Transferrin 28%

Active B12 84 pmol/L

Folate 5.3 ug/L

Vit D 48 nmol/L

They did not give ranges but looking at the charts I seem OK but near the bottom of the range for all of the above. Now I have tested I am supplementing Vits B and D

FT3 3.3 pmol/L (3.1 - 6.8 )

FT4 18 pmol/L (12 - 22)

TSH. 5.52pmol/L. (0.27 - 4.2)

Although it is good to see that FT4. is back in range I was not expecting the difference in TSH

I have changed when I take my tablets, I was taking them when I woke in the night, about 3 to 4am, but was either not going back to sleep or was sleeping through. Neither was good so I have followed my cousins advice and take them last thing at night.

I fast for a minimum of 2 hours before, usually at least 3.

All advice gratefully accepted, the current plan is to keep going with the supplements and do my NHS annual test early (June) before returning to my GP.

Reading this board I’ve often felt a bit relieved (possibly also a bit smug ) with my previous GP of over 30 years as he was very supportive.

Many thanks

[SlowDragon Administrator]

Are you still taking 125mcg levothyroxine

Do you always get same brand levothyroxine at each prescription

Take these results to GP and insist on 25mcg dose increase in levothyroxine

Meanwhile working on improving low vitamin levels

How much vitamin D are you taking

Which vitamin B complex

Ferritin needs significant improvement. Look at increasing iron rich foods in your diet

[Apples in reply to SlowDragon]

Thank you SlowDragon,

I am away with minimal luggage but will reply properly when not using a phone!

Ferritin used to be an issue but after the menopause I think it stopped being something I thought about, it's back on my radar now. I waited until after the 2nd test before takng B vits, I abandoned them coming away so will check the bottle when I get back.

My dose is unchanged, at 125mcg the dip and rise of my TSH in a short time puzzles me.

I will start noting the brands I am given, I don't think they used to change. After years of a listening GP it's a steep learning curve and I appreciate the support from the forum.

Apples

[SlowDragon Administrator in reply to Apples]

Would be interesting to know if recent brand was Accord or Almus (which is Accord boxed by Boots)

Other members have noticed some possible issues with Accord brand recently

[Apples in reply to SlowDragon]

Home again, so I can answer your questions.

I’m taking Holland and Barrett “B Complex and B12” I started after the test results taking 2 a day, the instructions say up to 6 and I’m going to up it to that over the day.

D is D3 1000iu/25ug one a day from Zipvit. I’ve been taking them for about a year.

For some time my Levo has been 100s from accord and 25 from Teva,

I see my next batch is 100s from Aristo and 25s from Teva.

I wonder if the Accord accounts for my change, I have been pretty stable for a long time. My records don’t show the brand I was given.

Many thanks

Apples

[SlowDragon Administrator in reply to Apples]

Suggest you put in a yellow card for recent Accord Levo

yellowcard.mhra.gov.uk/

You’re not the first member who’s recently had problems with Accord brand

[SlowDragon Administrator in reply to Apples]

so you need to increase vitamin D dose

Probably 2000iu-3000iu per day

Retest in 2-3 months

Even NHS guidelines say GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator in reply to Apples]

Recommend you get different vitamin B complex next time

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

[Apples in reply to SlowDragon]

Thank you so much, I feel much more confident. I had been so taken aback by my new GP’s comments. The links were fascinating, all bookmarked for future reference!

I know some brands of Levo have caused problems in the past and am not sure how I avoid being moved to one of them.

As it will be difficult to get to see my GP for a while, and my next batch of 100 is a different brand I will see how I go with them and the supplements.

Thank you again

Apples

[pennyannie]

Hello Apples :

Can you see a different doctor as you do not need Talking Therapy but a doctor who talks some sense.

Once on any thyroid hormone replacement we tend to feel better with a TSH under 2 - probably under 1 and at the low end of the range.

We tend to feel at our best when the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 60% :

Currently your T4 is coming in at around 60% with your T3 just in the range at 5% - and your ability to convert the T4 into T3 compromised.

The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 with most people feeling at their best when they come in this ratio at 4 or under -

so to find how well you convert the T4 into T3 you simply divide you T4 by your T3 and I'm getting you coming in at 5.45 so very wide of centre and showing very poor conversion.

I doubt even when your T4 becomes optimal and up in the top quadrant of its range your ability to convert T4 into T3 will resolve.

i see you have Hashimoto's AI thyroid disease so you are liable to ' swings ' in symptoms and erratic own thyroid hormone production as your immune system systematically disables your thyroid gland making you more reliant and likely needing a fuller spectrum thyroid hormone replacement such as adding in a little T3 - Liothyronine or switching to NDT - neither of which your doctor is allowed to prescribe as treatment needs to be initiated by a NHS endocrinologist which might be T3 - Liothyronine but it is a bit of a post code lottery.

I read that with Hashimoto's AI attacks our core strength vitamin and minerals of ferritin, folate, B12 and vitamin D can nose dive through the ranges and we need these optimal for any thyroid hormone replacement to work well :

With Hashimoto's it's also about healing the gut and checking for food intolerances that may trigger your immune system further - you may like to read around and understand that the research and work of Dr Izabella Wentz well received by forum members -

thyroidpharmacist.com

I haven't looked back at your previous posts as was just shocked by your doctors ignorance and flippancy.

I shall pop back there now -and sorry if you knew all this and think I'm trying to teach you to suck eggs !

Can you ask for a referral the endocrinology as you are not going to get anywhere with this person ?

[Apples in reply to pennyannie]

Thank you pennyannie. My previous GP was very much on board, he has retired and this was my first meeting with my new one. I was less than impressed!

Your explanation of conversion is very helpful, I was aware of the process but not how to see if it was optimum, I have not needed to argue with a GP before and wish to arm myself with as much information as possible first.

My TSH has fluctuated over the last 6 months, it was a high, but in range NHS one coupled with me feeling not right that made me do the first test.

I am away from home but will re read your email when I get back ( I find the phone a bit of a trial)

Apples