GP preparation after bloods: Hi, have had my... - Thyroid UK

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GP preparation after bloods

Kate261 profile image
20 Replies

Hi, have had my 7 week blood test after starting Levo for Hashimotos, on 100 mg.

I have a GP call to discuss the results on 2 Jan and I am just pre-empting her telling me to stay where I am as TSH has dropped from 6.6 to 1.6.

I have felt better in ups and downs but feeling less good this end of the 7 weeks. Mood is affected but improved by b12.

Does anyone have any tips for increasing if needed, if she’s not keen?

Many thanks, image attached.

Kat

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Kate261
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SlowDragon profile image
SlowDragonAdministrator

Well just testing TSH is completely useless

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

You already know you have Hashimoto’s

healthunlocked.com/thyroidu...

was test as Recommended

all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Kate261 profile image
Kate261 in reply toSlowDragon

Hi, yes I do. I did the test about 8:50am in the right circumstances.

If she says to maintain the dose I will try and afford a private test I guess. All is so exhausting when you feel so exhausted already!

Thank you for your reply, I am going to ask for vitamin retest too I think.

SlowDragon profile image
SlowDragonAdministrator in reply toKate261

What were your vitamin D, folate and B12 at last test

Ferritin was improving at 60

Keep on eating lots of iron rich foods to improve ferritin to around 100

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Kate261 profile image
Kate261 in reply toSlowDragon

Hi,

Ferritin was 63, range 13-150 (July 23)

B12 - 408, range 145 -569 (July 23)

Folate- 14.9, range 8.8- 60 (July 23)

Vit d 47 (Feb 22) - GP said she wouldn’t test as I was already supplementing.

SlowDragon profile image
SlowDragonAdministrator in reply toKate261

So what B vitamins are you taking

With those results you need a daily B12 and separate vitamin B complex

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

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...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

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

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

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 folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

SlowDragon profile image
SlowDragonAdministrator

Retest vitamin D yourself now

Aiming for at least over 80nmol minimum

100-125nmol may be better

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

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

But with Hashimoto’s, 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...

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...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Kate261 profile image
Kate261

Thank you, I take slow release b12 1000ug from Holland and Barrett and Vitabiotics vitamin d 3000iu with vitamin k seperately. I have asthma and the respiratory consultant suggested this much vitamin d.

Maybe I should look at a complex then when I re-buy.

TiggerMe profile image
TiggerMeAmbassador in reply toKate261

Vit D needs fat to absorb well so if these are tablets try taking with a fatty meal or a slug of olive oil, you could double dose for a couple of weeks to get things moving and maybe move to a sublingual oil based one that you can increase the dose slightly, I find Nature Provides D3 & K2 MK7 works well as not reliant or our poor stomach absorption 🤗

grassrootshealth.net/projec...

TiggerMe profile image
TiggerMeAmbassador in reply toTiggerMe

p.s. I'd hold steady with the current dose of T4 and let it settle in a little longer and concentrate on optimising your vits and mins

TiggerMe profile image
TiggerMeAmbassador in reply toTiggerMe

p.p.s... always get your prescriptions as early as you can and you'll build up a little wiggle room 😏 also ask if she will do a full thyroid panel so that you can see if you are converting to fT3.... you might get lucky 🤞

Kate261 profile image
Kate261 in reply toTiggerMe

Thanks so much! Will do :)

TiggerMe profile image
TiggerMeAmbassador in reply toKate261

You don't want to keep increasing too often or in to bigger steps as you might miss your sweet spot which makes you feel equally crappy, the smallest pills are 25mcg the GP's tend to base your dosing around that daily but many of us split pills to fine tune...

e.g. I take 100mcg T4 per day (prescribed dose) and twice a week add an extra 50mcg (some people are more sensitive would spread that more evenly throughout the week)

You are in creep mouse mode 🙃

TSH110 profile image
TSH110

If your GP is insiting on dosing based only on TSH then it should be well under 1, so it’s still too high especially as you still have symptoms. The idea of optimisation of thyroid replacement hormone therapy is to reach a euthyroid state where symptoms cease, not be any old place within the range (numbers in brackets) I feeling rubbish. Your GP appears to have no understanding of optimisation it varies from person to person so one size does not fit all and anywhere in range is simply not good enough. Dr Toft an eminent endocrinologist suggests TSH 0.25 - 0.5 and free t4 and freeT3 in the top third of their ranges (should you get a private test you can check those too) I think they will also be miles off.

If you contact thyroid U.K. admin they will give you a copy of the Toft article in Pulse (for GP’s) and you need print it off and highlight the answer (I’d use a fluoro marker) to qn. 6 , and just show that to your GP and say that’s what you want not 1.6 which is clearly too high. Toft was surgeon to the Queen when she was in Scotland should his credentials be questioned. He has retired now, Thyroid U.K. is recommended by nhs choices so drop that in if you need to. Hopefully you will get a much needed increase in dose until you are properly medicated. You should find symptoms resolve. Just tampering with vitamins is not addressing the underlying problem of an inadequate dose of thyroid hormone. I would address the underlying issue in addition to vitamins not just do vitamins. You can take the Levothyroxine at night before bed it is better absorbed than a morning dose.

Kate261 profile image
Kate261 in reply toTSH110

Hi, thank you so much for coming back to me.

This is so useful. I don’t think I could take the Levothyroxine at night as I have asthma drugs to take too. The go appt is on Tuesday and my mum has had this fight her whole life so just want to be prepared. It was quite a fight to be put on Levo as it was!

Many thanks again 😊

TSH110 profile image
TSH110 in reply toKate261

At least it’s something concrete you can show the GP with actual numbers from a respected professor of endocrinology and former President of the Royal College of Physicians, so hard to challenge.

Good luck ☘️🍀☘️

Kate261 profile image
Kate261 in reply toTSH110

Yes, super helpful thank you so much!

Kate261 profile image
Kate261 in reply toTSH110

Hi, by way of an update- it was a telephone appt 🙄 so I didn’t get a chance to see her or show her anything. Long story short is she doesn’t want to increase but it’s always ‘a negotiation’. She thinks I’ve not been on it long enough to see the impact as ‘clinically you are subclinical on paper’ . So will retest in 3 months. I think I’m at the point already where I will try and find a private specialist… sigh.

tattybogle profile image
tattybogle in reply toKate261

info in these posts may be useful in your future 'negotiations' with GP's

healthunlocked.com/thyroidu.... -list-of-references-recommending-gps-keep-tsh-lower-in-range-

healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.

Kate261 profile image
Kate261 in reply totattybogle

Thank you so much!

TSH110 profile image
TSH110 in reply toKate261

that’s rubbish 6 weeks is enough to determine you are undermedicated on a particular dose NOT THREE MONTHS 🤬can you see someone else who knows what they are doing? In the meantime put it all in writing and send it to her by hand and demand an increase, again. She is ignoring all the advice TSH should NOT be over 5 on thyroid hormone therapy. Have you worked out the dose by your weight using NICE guidelines (which are pretty mean in my opinion) but will most likely be more than what that incompetent doctor is refusing to increase . If so, you can point out she is not following NICE guidelines She has ZERO understanding of optimisation and doesn’t listen to her patients it makes me furious idiots like rest are allowed to practice and pull in £100k a year to keep people ill. If my plants at work were all sickly I’d be sacked! I make sure I know about every one of them and how to best to look after them and what can go wrong and how to redress it. Isn’t that being a professional? If you do get in the surgery to meet the awful woman face to face refuse to move out of the consulting room until she ups your dose. Id just sit there and brazen her out . But who needs it? If she was acting in a professional manner and doing her job properly she’d be suggesting an increase in dose as the right course of action, no questions asked.

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