On behalf of a friend: I'm writing on behalf of a... - Thyroid UK

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On behalf of a friend

mistydog profile image
12 Replies

I'm writing on behalf of a friend. We share a GP surgery.

She had a TT for Graves a couple of years ago, so is now hypothyroid. I don't know if she has Hashimoto's, but at this point I'm not sure it is relevant.

I've been giving her tips about testing and these are her most recent results. She has been told "normal no action". She doesn't feel well, gaining weight and generally cold and tired. I've suggested she make an appointment to discuss the results and that she should start supplements where low.

What she would like is ammunition for the GP to increase her dose. (She has actually increased from 125 to 150 mcg already pending at change of script.

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mistydog profile image
mistydog
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12 Replies
SlowDragon profile image
SlowDragonAdministrator

Yes, she’s currently under medicated

So she will need to retest 6-8 weeks after increasing dose levothyroxine to 150mcg

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

Does she always get same brand levothyroxine at each prescription

B12 and folate low

Likely to benefit from supplementing daily vitamin B complex (and separate B12 for few weeks/months)

Needs vitamin D tested too

SlowDragon profile image
SlowDragonAdministrator

Low folate and low B12

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

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

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

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

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...

Low B12 symptoms

b12deficiency.info/signs-an...

If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

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

healthunlocked.com/thyroidu...

Vitamin D

Aiming for vitamin D at least around 80nmol minimum

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

mistydog profile image
mistydog in reply toSlowDragon

Yes she took the test at 8am, fasting and no caffeine. She has started most supplements but will get her to add a B complex.The gap didn't add Vit D, and rather than postpone the test decided to wait till next time. Also no T3 tested, again we will ask at the next test.

Will ask about brand.

Thank you

shaws profile image
shawsAdministrator in reply tomistydog

If B12 is low we should not take supplements until it is confirmed that we have pernicious anaemia. I have this condition too and once we have one autoimmune disease we can develop others.

My present GP allows me to have a monthly B12 injection rather than the 'usual' 3 monthly.

My mother also had perncious anaemia but her GP, after her getting an injection for years, told her that she no longer needed them. Both my sister and I thought that was 'good' that she didn't need B12 anymore.

That decision made by the doctor caused my mother to develop stomach cancer and she died due to this condition rather than pernicious anaemia.

mistydog profile image
mistydog in reply toshaws

I'm so sorry, that's pure negligence. I hope they were struck off.

I'll mention this to her .

shaws profile image
shawsAdministrator in reply tomistydog

We're fortunate that we now have access to the internet to double-check what doctors state. They are supposed to diagnose a person if their TSH is high. You can click on my name and it will take you to my page where I've put my history to get diagnosed.

pennyannie profile image
pennyannie

Hello Mistydog :

Apart from the obvious can I just add that a fully functioning working thyroid would be supporting her daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

T4 is inert and needs to be converted by the body into T3 : the active hormone that runs the body.

T3 is said to be around 4 x more powerful than T4 with the average person needing to find/convert around 50 T3 daily - just to function.

Apart from needing optimal levels of ferritin, folate, B12 and vitamin D conversion can also be compromised inflammation, depression, dieting and ageing so whilst we can't hold back time there can be other issues at play here.

Some people can get by on T4 only :

Some people find T4 seems to stop working at some point in time and need the addition of a little T3 - likely to replace their own missing T3 through having had a thyroidectomy, and then making a T3/T4 combo :

Some people can't tolerate T4 - Levothyroxine and need to take T3 - Liothyronine only :

Some people find that Natural Desiccated Thyroid suits them best as it contains all the same known hormones as that of the human gland.

Currently in primary care doctors can only prescribe T4 - as the NHS has removed both other options - and now a referral to an endocrinologist is needed and it is a post code lottery as certain CCGs throughout the country are restricting and even reducing patients prescriptions and it's all basically down to cost rather than medical need.

Many of us on here have been forced to self medicate me included.

I am with Graves Disease, like your friend, but I had RAI thyroid ablation in 2005 and became very unwell in around 2014 and after over 2 years of going various O/P departments with no one finding anything other than a low ferritin, I found this forum, amongst others, and now am much improved and take NDT.

It will be in your friend's best interest to start reading up on the forum and registering her own questions and she will be supported through her own thyroid journey back to better health.

Just as an aside her TSH should be down under 2 and more likely under 1 :

This will happen as her thyroid hormone medication becomes optimal :

Despite her dose of 125mcg/150 mcg T4 it looks like it's not working very well as her T4 is only around 27% through the range and we generally feel better when T4 is in the top quadrant of the range as this should, in theory, convert to good level of T3 at around a 1/4 - T3/T4 ratio.

There is no T3 result - which is the most important result but I'd guess very low and why the TSH is so high:

I also think serum B12 needs to be around 500++ and folate at around 20, and ferritin might be better slightly higher at around 100, and I can't see a vitamin D result nor a ( CRP ) inflammation marker ?

If your friend doesn't know of the Elaine Moore Graves Disease Foundation website I found it an excellent adjunct to this forum :

mistydog profile image
mistydog in reply topennyannie

Thanks, I agree with everything you say, she's not great with tech though, hence me asking in her behalf.

I take NDT myself so not a novice.

pennyannie profile image
pennyannie in reply tomistydog

Well I doubt anyone is as " uneducated on tech " than me - but It will be in her best interests to start reading up and with the internet it is much easier than sitting down the library or buying books inappropriate that you get lost in.

I'm dyslexic so have some additional issues but her confidence will grow, just as mine did and I leave the " cut and paste " to others as in my world i need to have scissors and glue.

mistydog profile image
mistydog in reply topennyannie

😊 I'm working on it! I did say she should join.

shaws profile image
shawsAdministrator

I believe quite a number of GPs are quite ignorant about how best to treat patients who have a dysfunctional thyroid gland,

I've found that out through my own expreriences. Even when TSH was 100, GP phoned to tell me that I had no problems and results were 'fine'.

I'm thankful that I was, by then, a member of TUK before this forum began.

mistydog profile image
mistydog in reply toshaws

Yes, exactly. I hope she gets them to look again and agree the increase she clearly needs

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