HELP - TSH still below range, advice please. - Thyroid UK

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HELP - TSH still below range, advice please.

DoeStewart profile image
19 Replies

Hi everyone, I have just had the results of my 2nd Medichecks test, the previous test results were August 2018. Results as follows:-

TSH 0.183 (0.27 - 4.2) previous 0.159

Free T3 4.41(3.1-6.8) previous 4.27

Free T4 16.2(12 - 22) prev. 16.5

Thyroglobulin Antibody <10 (115) previous <10

Thyroid Peroxidase Antibodies <9 (34)

previous <10

Ferritin 52 (13-150) previous 64

Folate 19.8 (3.89 - 26.8) prev 4.84

Active B12 96.9 (37.5 - 188) prev 58.1

25 OH Vit D 63.7 (50 - 175) prev 53.6

I have been supplementing as per the advice from my August post. Jarrow B Right 1 tablet per day/ Better You Vitamin D spray/ Vitamin K2 MK7/ magnesium/ selenium, I take a berroca every day for vitamin C. I have also been eating liver once per week - I don't normally eat any red meat but started eating liver as per advice given on the forum. My Ferritin level has actually decreased?

I would be grateful for any advice regarding my results and next steps to take. My GP wanted to reduce my Levo in August as my TSH was below range but I refused and remain on 100mg per day. I had 7/8ths thyroid removed 30 years ago.

I just don't know what to do next.

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19 Replies
greygoose profile image
greygoose

What you need to do is forget the TSH, and get yourself an increase in dose. You are under-medicated. Doctors who make people sick by trying to keep their patient's TSH in-range, should be shot, in my opinion. Presumably, he swore to do no harm, but that's exactly what he is doing by insisting on reducing your levo to keep your TSH in-range. :(

DoeStewart profile image
DoeStewart in reply togreygoose

Thank you for reply greygoose. As usual TSH is all GP interested in and keeps going on about reducing Levo down to 75mg which I will not do. I don't think I have a chance in hell of getting increase in Levo from Doctor but I can see there is plenty of room on T4 and T3 results for improvement. What about the vitamins- do you think I should just keep on with them at same doses? Grateful for any advice.

SlowDragon profile image
SlowDragonAdministrator

Your FT4 shows you have room to increase Levothyroxine dose a small amount. But your GP unlikely to agree

You might be better adding small dose of T3

Email Dionne at Thyroid Uk for list of recommended thyroid specialists. It's difficult to get T3 on NHS, but not impossible. Obviously for an NHS referral you need GP to agree to refer you. You may need, initially to go private to get 3 months trial

Folate and B12 have improved nicely

Vitamin D needs to be higher. How much are you currently supplementing? Suggest you double the dose and retest in 2-3 months

Not sure that Berocca is best source of vitamin C. Suggest you get a better vitamin C supplement.

I use Doctors Best. (Not cheap)

Not sure what SeasideSusie recommends for vitamin C?

DoeStewart profile image
DoeStewart in reply toSlowDragon

Thanks for replySlowDragon. I currently take Better You VitaminD spray 3000 once per day. I also don't understand why my Ferritin level would reduce? I will look for a better Vitamin C product. I am seriously considering going my own way with regards to T3 as my GP never tests it and looks as if she's going to pass out when I try and have a conversation about it. TSH is God I'm afraid.

SlowDragon profile image
SlowDragonAdministrator in reply toDoeStewart

Yes vast numbers on here (including myself) didn't make progress until full private testing

Then seeing a recommended thyroid specialist for T3 prescription....

It is extremely difficult to get T3 on NHS, but not impossible. To some extent depends on post code and which CCG area you are in. Some have imposed blanket bans regardless of clinical need. Others will honour offering NHS prescription if diagnosed by NHS endocrinologist

Obviously many, either draw a blank after jumping the numerous hoops, or can't afford a private endocrinologist consultation, and initial private 3 month trial, so are forced to self supplement

Roughly where in the the U.K. are you?

Searching Liothyronine here, will show prescription rates in individual CCG's (over time as well)

openprescribing.net

BTA guidelines

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018

Note that it says test should be in morning BEFORE taking Levothyroxine

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

Debates in parliament

theyworkforyou.com/search/?...

DoeStewart profile image
DoeStewart in reply toSlowDragon

Hi SlowDragon I live on the Wirral. I have started to do private blood tests as my surgery only do TSH and T4 even if the Dr puts T3 on the form the lab never do the test. The Lab see my TSH under range and recommend drop in medication which the Dr then passes onto me. In the 30 years since my thyroid operation I have never had Dr query anything except TSH - I give up.

SlowDragon profile image
SlowDragonAdministrator in reply toDoeStewart

Which is why so many hundreds of patients have to

1) test bloods privately

2) see endocrinologist, often privately if GP won't refer

3) regularly privately test and self supplement vitamins to maintain optimal levels. This can help with TSH

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we may need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

DoeStewart profile image
DoeStewart in reply toSlowDragon

Thank you SlowDragon, Yes, it seems the only way to feel well is by taking our health into our own hands regardless of what the Doctors say. Thanks for your time and I will try and find a thyroid Endo near me as GP wanted to refer me to one in local hospital who is actually a diabetic specialist - I refused.

Lyris83 profile image
Lyris83 in reply toDoeStewart

Hi doe I'm also on the wirral and am just starting the whole delights of tests and diagnosis etc. I was referred to endo at arrowe park... I didn't realise until afterwards the endos are all diabetes specialists 🙄

SlowDragon profile image
SlowDragonAdministrator in reply toLyris83

Email Dionne at Thyroid Uk for the list of recommended thyroid specialists

Then if there's a particular endocrinologist you think you want to see you can put up a new post asking people for their experience by private message

DoeStewart profile image
DoeStewart in reply toSlowDragon

Thank you SlowDragon I will email Dionne for the information.

DoeStewart profile image
DoeStewart in reply toLyris83

Hi Lyris83, oh yes, when I was hyperthyroid I was referred to Arrowe Park to see the specialist. He was a diabetic consultant, that was over 30 years ago, nothing changed has it?. All we do is go round in circles trying to get help and hoping someone will look at us and listen instead of just looking at the blood results. I wish you well on your journey, at least this forum is here and you can gain knowledge and advice from people in the same boat as you. Keep well.

SeasideSusie profile image
SeasideSusieRemembering

SlowDragon said

Not sure what SeasideSusie recommends for vitamin C?

Well I'm afraid it wouldn't be Berocca. I realise they make more than one type by this is what is in the basic Berocca with 476mg Vit C

Citric acid, Sodium hydrogen carbonate, Vitamin C, Magnesium sulphate, Mannitol, Calcium carbonate, Magnesium carbonate, Favouring, Sodium carbonate, Niacin, Sweeteners (Acesulfame K, Aspartame), Sodium chloride, Zinc citrate, Colour (Beetroot red, Beta carotene), Pantothenic acid, Maltodextrin, Riboflavin, Thiamin, Acacia gum, Vitamin B6, Partially hydrogenated soybean oil, Sugar, Trisodium citrate, Anti-foaming agent (Polysorbate 60), Folacin (Folic acid), Antioxidants (DL – alpha tocopherol, Sodium ascorbate), Biotin, Citric acid, Vitamin B12

Then in the 1000mg one there is

Citric acid E330, Ascorbic acid, Foaming Agent: Sodium Bicarbonate E500, Inulin, Sweetener: Sorbitol E420, Colour: Calcium Carbonate E170, Flavours: Orange, Lemon & Apricot, Colour: Beta Carotene E160a, Sweetener: Aspartame E951, Sweetener: Saccharin E954. Contains Phenylalanine.

I'm not one for stuffing myself with all sorts of nasties.

Personally I use Acerola Cherry powder, made from the juice of acerola cherries - whole food, natural Vit C and nothing else.

The Doctor's Best Vit C that SlowDragon uses is from ascorbic acid from Scotland, most ascorbic acid comes from China.

I used to use Nutribiotic L-ascorbic acid powder (L-ascorbic acid is better than D-ascorbic acid, but you don't find many manufacturers saying which type they use, if they don't mention it then it's the D-ascorbic acid). But that doesn't say where the ascorbic acid is sourced so I changed to Acerola Cherry powder.

Any type of ascorbic acid in a drinkable form should be drunk through a straw to protect teeth.

SlowDragon profile image
SlowDragonAdministrator in reply toSeasideSusie

I knew you'd give a lovely informative reply

Thanks

DoeStewart profile image
DoeStewart in reply toSeasideSusie

Very informative SeasideSusie, I shall stop the Berroca and try a better product. Are all the good vitamin C products powders?

SeasideSusie profile image
SeasideSusieRemembering in reply toDoeStewart

Well, there are probably some good tablets, but all tablets need fillers. You'd need to check the full ingredient list of tablets and capsules. I just use powder because there are no additives and it makes a nice little drink. I mix the powder with a little water, add some orange juice, then include some garlic liquid (I take that every day), nice little drink and disguises the garlic liquid).

DoeStewart profile image
DoeStewart in reply toSeasideSusie

That makes sense then, I'll check to see if I can find any decent tablets but if not then I will buy the powder. Thank you.

MiniMum97 profile image
MiniMum97 in reply toDoeStewart

Berroca May also contains B6 which with your Jarrpws B may push you over the 10mg max a day for b6

DoeStewart profile image
DoeStewart in reply toMiniMum97

Thanks for the heads up on that MiniMum97. Although my B12 has increased in the 6 months since I've been taking the Jarrows B, I did think it would have gone higher than it has?

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