Help with blood test results interpretation - Thyroid UK

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Help with blood test results interpretation

Holibobble profile image
83 Replies

I was diagnosed as under active in Dec 2021 I was put on 25mg of Levothyroxine I am 52

I have been suffering tiredness and aches and pains in my arms and legs and hair coming out in droves.

I asked for an increase in medication each time I talk to a Dr and they all say no, I said about the NICE guidelines on calculating the dosage and they still say no and this time he basically said if anything he would take me off meds as he wouldn’t have jumped into prescribing Levothyroxine even though I have been low since 2014.

I was found to be Vit D deficient and now B12 and folate deficient I am a meat eater by the way serum B12 403ng/L [187.0_883.0] Serum folate 2.9ug/L [3.1-883.0]

TheDr said just get a cheap multi vitamin I asked for my test results turned up and they only gave me my latest results so I will have to ask for my previous ones again.

Serum TSH level 2.7mu/L (0.4-4.9) that’s all on my thyroid that was tested I am not allowed another blood test till January any advise for me would be appreciated

well I have had an update I spent several hours last night watching the seminar from when the NICE guidelines were released its on YouTube as I had an appointment this afternoon to discuss my menopause on the phone again. I took several pieces of advise from many of you firstly I was more determined I decided to go and ask for a trial increase I stated the guidelines with mg versus Kg for the meds and said about treating the person and not the numbers on the screen he agreed with that but was very reluctant he said he could get into trouble for it as it was the head Dr that fobbed me off last time and really it was going against him even though he was an independent GP. He looked up the guidelines whilst we were talking then he said OK we will try it but you will have to book in with me every 4 weeks and then test my bloods in 8 weeks as long as I feel OK so Thanks to everyone who contributed I really hope it does improve my symptoms and it isn’t the menopause 😜

83 Replies
Charlie-Farley profile image
Charlie-Farley

Hi Holibobble

Welcome to forum. You are being mistreated and another person who has been put on a starter dose for a child and left on it 2nd post I have seen this week. I too had this mistreatment and was made very ill. This is wrong.

You were right to flag the NHS guidelines on dosing. Your doctor is an incompetent to not even consider they just might have stuffed up. You need a different doctor. This one is not going to have an epiphany any time soon and his manner sounds controlling and abusive. Threatening to remove medication completely if you make a fuss.

I too was started on a child’s dose. Please take the time to read my profile. I wrote it for others who might need to see how to proceed. Being deferential is not one of them. Cool, dispassionate and with all your ducks in a row- embrace the telecon you can have all your notes in front of you and they can’t see you!

Be prepared to test privately to get the complete picture.

There are some very rogue, very ignorant, very incompetent doctors out there. There are some good ones - the ones who accept (if not admit) they don’t know it all and will take your lead and work with you if you get a handle on your own condition, the days of being a passive patient are over I’m afraid 😳.

But you are in the right place with some incredible people on this forum who I credit with saving my life. As a final note I am on 150 µg of levothyroxine and doing well - it can be done!

Holibobble profile image
Holibobble in reply to Charlie-Farley

Thanks I’ll read your profile

MaggieSylvie profile image
MaggieSylvie in reply to Charlie-Farley

A great post Charlie. Are you aware that GPs won't even look at privately test results? I showed mine to my new GP last year and he didn't comment as there wasn't time. I showed my latest ones to the nurse practitioner and she told me that the doctors wouldn't consider results from a private testing organisation even if the laboratory was one used by the NHS. When they do ask for NHS tests to be done, they don't even advise us to get them done before 9 am and then only look at TSH.

OudMood profile image
OudMood in reply to MaggieSylvie

I would say to not accept no as an answer.

Why do you not accept them doctor? What is the medical or scientific basis for that?

If it is policy, what is the basis for that? They will often respond with we can’t be sure of their methods and this or that.

You then show them it is an NHS lab. They cannot keep contesting for no reason.

It’s a bit like when you get “the manager will tell you the same thing”, very often the manager does not tell you the same thing.

I changed surgery the moment I was told very boldly by a doctor that she won’t give me a trial of Levo no matter what evidence I will show her or no matter what the NICE guidelines say.

Negligent at best.

She had that boldness despite me being 27 and completely unable to live my life.. at 27!!!!!!!

MaggieSylvie profile image
MaggieSylvie in reply to OudMood

I suspect the answer will be it's the policy in this area.

Charlie-Farley profile image
Charlie-Farley in reply to MaggieSylvie

I fancy a huge amount of policy has much to do with saving money and little to do with wellness, though they pop up snappy posters encouraging us to go to them with any concerns.

MaggieSylvie profile image
MaggieSylvie in reply to Charlie-Farley

I'm sure you're right but they're not going to admit it to a mere patient.

Charlie-Farley profile image
Charlie-Farley in reply to MaggieSylvie

indeed……. But we can tell them we know 🤣👍

SlowDragon profile image
SlowDragonAdministrator in reply to MaggieSylvie

MaggieSylvie

There are plenty of Dr’s who are happy to accept private test results

I haven’t had an NHS test for 7-8 years

I give copies of my test results to my GP at my annual review and they are added to my medical records

GP more than happy to accept my private test results and freely admits doesn’t really understand how to manage Hashimoto’s

I get prescribed levothyroxine and T3 on NHS

I self treat vitamin deficiencies

I self source eye drops (TED due to Hashimoto’s)

I self funded endoscopy that diagnosed gluten intolerance (NHS did follow up DNA test ….result ambivalent…possibly but not definitely coeliac)

Self funded Dio2 gene test

My GP was absolutely fascinated to see my thyroid antibodies were reducing after cutting gluten

NHS only ever test thyroid antibodies once

My GP now advises all Hashimoto’s patients to work on improving vitamin levels and trial strictly gluten free diet

MaggieSylvie profile image
MaggieSylvie in reply to SlowDragon

I guess you have many years of study as a patient behind you and have gained the support and admiration of your GP. Well deserved. I, on the other hand, have yet to even be diagnosed and if I started to throw my weight around when I'm only a newby, I don't think it would get me very far. When I presented private results to my GP he didn't take much notice, but it was the practice nurse who actually refused to take the copy of my results and said that the doctors wouldn't take any notice. I replied that the tests were done in an NHS hospital laboratory and she was adamant that it would make no difference. She may not be right.

I'm due to do a surgery-requested test in ten days time, requesting B12 + Folates; Bone profile; Free T3 (YAY!); Free T4: HbA1C; LFT'S; FBC; TSH; U+E and Vit D. I am going at 8.30 am, having fasted overnight, with just water. At least I get my results online, often later the same day as the test, and as usual, will post them here and see how it goes but it won't be the same lab as the Monitor My Health, so I don't know how any comparison can be made or whether it would even be worth trying.

SlowDragon profile image
SlowDragonAdministrator in reply to MaggieSylvie

I was left grossly inadequately treated 20 plus years…..but at least with sky high antibodies and TSH of 7 …..I was diagnosed 26-7 years ago with Hashimoto’s

only made progress when joined the forum in 2015/6

More on my profile

MaggieSylvie profile image
MaggieSylvie in reply to SlowDragon

I' m so sorry to hear the number of years you must have been suffering without having been diagnosed. I would think you have plenty of confidence to tell doctors what's what, since they owe you respect for all you have gone through and how you have taken charge of your own health. At 77, I consider myself symptomless, so will not have the same clout if I am ever correctly diagnosed. You deserve a medal, especially for all the knowledge you share on a daily basis on HU. Thank you.

MaggieSylvie profile image
MaggieSylvie in reply to SlowDragon

I had my annual review today. I received a phone call from the surgery pharmacist (this is something new), and as I am undiagnosed, the question of blood tests didn't arise.

Charlie-Farley profile image
Charlie-Farley in reply to SlowDragon

One if the good ones!

Charlie-Farley profile image
Charlie-Farley in reply to OudMood

😊👍 take no prisoners! OudMood. Good for you.

Charlie-Farley profile image
Charlie-Farley in reply to MaggieSylvie

I walked my GPS through my results over the phone. They were uncomfortably out of their zone. They don’t know/have not been taught to compare. I have explained my results are from a certified lab, superior to NHS tests and if they want to compare the meagre offerings from a bald NHS test to the plethora of good solid info on a private test, converting results to percentages within range makes them comparable and is a perfectly legitimate way to do so.

They get a written report before we speak so they can prepare - I’m awful I know but this is my health and I take no prisoners! 😂👍

Jaydee1507 profile image
Jaydee1507

I'm so sorry your GPs are ignorant. If you have tried all the Gps at that practice then I would encourage you to get a recommendation from a friend and move practice. Leaving you on 25mcgs for this length of time is appalling.

Other things that could help in the mean time:

What happened about the b12 deficiency? Your numbers there don't look too bad but I'm not an expert.

Start supplementing the vitamins that you know are low once it's decided you definitely aren't B12 deficient. Many here use Thorne basic B complex.

Where is your ferritin result? Get you GP surgery to print them out and post here.

Holibobble profile image
Holibobble in reply to Jaydee1507

ferritin 277ng/ml (15.0-204.0)

Jaydee1507 profile image
Jaydee1507 in reply to Holibobble

OK, then ferritin is fine.

What was decided about your b12?

You really need to take charge here, else you will forever languish on 25mcgs Levo and be in terrible shape. I know it will take everything you've got to do that. Get your partner or a relative to help and support you if possible but it's down to you, and you alone to sort this. People here can advise what your next step is. It really shouldn't be like this but here we are.

Holibobble profile image
Holibobble in reply to Jaydee1507

I do I honestly do I am shot down every time it brings me close to tears each time they say my levels have never been better

Jaydee1507 profile image
Jaydee1507 in reply to Holibobble

I'm sure you are trying your hardest and obviously its very upsetting if they aren't doing what is necessary here. They aren't listening to you. I was at a similar point years ago, although on 125mcgs levo and my GP told me I was taking enough, that was it. Eventually I saw a different GP same practice and they put me up to 150mcgs.

You could try contacting the practice manager with NICE guidelines and make a complaint. Either that or change GP surgery and find a helpful GP, which do actually exist, just they aren't everywhere. You have my sympathy.

Holibobble profile image
Holibobble in reply to Jaydee1507

Thanks I’ll keep trying to do my best

Hedgeree profile image
Hedgeree in reply to Holibobble

I know how difficult it can be when your GP won't listen or try to understand how unwell you feel. It is very upsetting.

I've found writing to my surgery has got better results, keeping the letter brief and polite outlining what the issues are, what you'd like them to do and refer to any supporting NICE guidelines or other research. Also provide a copy of the letter for the practice manager.

Keep going Holibobble. Best wishes.

Charlie-Farley profile image
Charlie-Farley in reply to Jaydee1507

Jaydee you are right

Holibobble get a person to go with you who is not deferential. It is essential they will back you in a strong controlled way. A well meaning deferential person will undermine you yet further. Be careful who you pick- my hubby was brilliant, but I have friends I know would have got in there and started doffing their caps and been no use to me. Nice is not the essential quality (though hubby is nice he does a brilliant withering stare).

Holibobble profile image
Holibobble in reply to Charlie-Farley

I have only had phone appointments so far so it’s pretty difficult,I have another one tomorrow but that’s about being menopausal thinking maybe that’s adding to my tiredness

Charlie-Farley profile image
Charlie-Farley in reply to Holibobble

Even with the Telecon, it doesn’t hurt for them to know somebody else is listening in.

I was going through the menopause when I was diagnosed. Thankfully apart from a few hot flushes and being a bit teary it didn’t have a major impact on me the major impact with the hypothyroid symptoms which could quite easily have been passed off as being menopausal.

The fact I never raised menopause as an issue helped keep the focus I think for them. It was never even discussed. To be perfectly honest if I hadn’t had hot flushes, I would have barely realised it had happened I had so much on my plate at the time, my own health was an aside. Paying for that now! Should’ve realised! I can look back over my patient records and I can see symptoms going back 10 years for the hyperthyroidism.

Eeyore100 profile image
Eeyore100 in reply to Holibobble

I would say don't let them fob you off with HRT until you have sorted your Levo dose... they did that with me and I spent another 18 months undermedicated, like Charlie-Farley says the symptoms overlap but get your thyroid needs sorted first... if you do then add in HRT (which is great but can be a whole other struggle to get the right stuff) you might well find you need to increase your Levo a little more as Estrogen is a bit of a blocker.

I would work on one thing at a time so you get a real feel for the ups and downs of both

Keep going you will get there 🤗

Zazbag profile image
Zazbag in reply to Holibobble

Your ferritin is very high, 73 ng/mL above the normal range. This likely indicates inflammation or even haemochromatosis (a genetic condition that causes iron overload). Please leave your current surgery, find a GP who is competent, and among your thyroid concerns please flag that you have very elevated ferritin levels that warrant further investigation.

SlowDragon profile image
SlowDragonAdministrator in reply to Zazbag

Zazbag

Holibobble has been taking multivitamins, which most likely contain iron….likely the cause of high ferritin

Though ferritin can be high due to inflammation

Zazbag profile image
Zazbag in reply to SlowDragon

But hypothyroidism causes issues with absorption no? Before I added T3, I never saw my ferritin go above 55 even when I took 420mg a day for months! Multivitamins only contain about 14mg of iron, and the fact they're multi affects the bioavailability of the iron making it even harder to absorb. Obviously OP isn't me and maybe it's different in post-menopausal women but I was shocked to see such a high ferritin level!

SlowDragon profile image
SlowDragonAdministrator in reply to Zazbag

I have Hashimoto’s…..now post menopause…..my Ferritin is extremely high 380 approx….and rises at each test

but GP does a full iron panel test to check iron is fine every couple of years …it is absolutely fine

High ferritin levels can be due to inflammation of Hashimoto’s

Not everyone with Hashimoto’s has low iron/ferritin

Holibobble profile image
Holibobble in reply to Zazbag

I only have started multivitamins 2 weeks ago and didn’t take them at the time of this blood test I feel like I do have inflammation in my body as I have lots of aches and pains in my body and joins but the other tests they said did not have anything I thought I might have something I am wondering about Lupus as I have a butterfly rash across my face mainly at night though

SlowDragon profile image
SlowDragonAdministrator

Absolutely, you need next 25mcg dose increase in levothyroxine and bloods retested in 6-8 weeks

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

See different GP and insist on 25mcg increase in levothyroxine

Vitamin levels are deficient BECAUSE you are under medicated

Levothyroxine doesn’t “top up “ failing thyroid, it replaces it

GP must prescribe folic acid for folate deficiency

how low was vitamin D

How much vitamin D are you currently taking

Have you had ferritin levels tested

If not request full iron panel test for anaemia and thyroid antibodies tested for autoimmune thyroid disease

Dose levothyroxine is increased slowly upwards in 25mcg steps until on approx 1.6mcg levothyroxine per kilo of your weight per day

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Holibobble profile image
Holibobble in reply to SlowDragon

I printed out the nice guidelines and worked out with my weight I should ne on 125mg but all 3 GPs have refused saying that’s not how it works. My vitamin D levels were not given to me but I was put on a high does for 6 weeks then told to buy an over the counter one to keep it topped up

Charlie-Farley profile image
Charlie-Farley in reply to Holibobble

your GPS are mental. 😱

Holibobble profile image
Holibobble

ferritin 277ng/ml (15.0-204.0)

greygoose profile image
greygoose in reply to Holibobble

That looks high. But, just testing ferritin isn't good, you also need tests for inflammation levels, because high levels of inflammation will falsely raise the ferritin level. A test like CRP is needed.

Don't ask your doctor for your results, he would probably rather you didn't know, in case you start arguing or asking questions he can't answer! Ask at reception for a print-out of whatever you want. It is your legal right to have one. :)

Holibobble profile image
Holibobble in reply to greygoose

I have got one blood results it is a full one what would CRP come under ? Is it the creative protein level because if it is I have it as above range at 6mg (0.0-5.0)

greygoose profile image
greygoose in reply to Holibobble

Yes, that's right, C-Reactive Protein. So, that's high. So, your ferritin is a false high, nothing to worry about. :)

SlowDragon profile image
SlowDragonAdministrator in reply to greygoose

But Holibobble has been taking a multivitamin (presumably with iron in) for last 5 months …..so ferritin (and iron) may be too high

greygoose profile image
greygoose in reply to SlowDragon

And, then again, it might not. It's a multi-vit. Holibobble what multi are you taking? What are the ingredients? And, how far apart were the CRP test and the ferritin test that gave these results?

Holibobble profile image
Holibobble

I have got one blood results it is a full one what would CRP come under ? Is it the creative protein level because if it is I have it as above range at 6mg (0.0-5.0)

SlowDragon profile image
SlowDragonAdministrator

next step then is to get FULL thyroid and vitamin testing done yourself

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Which brand of levothyroxine are you currently taking

Do you always have same brand levothyroxine at each prescription

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am 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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

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. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Come back with new post once you get results

Meanwhile

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors 

tukadmin@thyroiduk.org

Sounds like you have right bunch of useless GP’s

On levothyroxine TSH should ALWAYS be below 2

being under medicated, results in low vitamin levels

Low vitamin levels tend to lower TSH

NHS England Liothyronine guidelines July 2019

 

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

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Holibobble profile image
Holibobble in reply to SlowDragon

Thanks lots to read up on here

SlowDragon profile image
SlowDragonAdministrator

I asked for my test results turned up and they only gave me my latest results so I will have to ask for my previous ones again.

You are legally entitled to printed copies of ALL of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Get tested NOW

Don’t take a multivitamin

Assuming B12 is below 500……

Suggest you start taking B12 supplement after you get results

Low B12 symptoms 

b12deficiency.info/signs-an...

With 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.

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 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

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

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...

If GP refuses to prescribe folic acid …..two weeks after starting B12 ….add daily vitamin B complex

Or …..once you finish prescription for folic acid …..start taking daily vitamin B complex

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-...

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) 

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

SlowDragon profile image
SlowDragonAdministrator

Be a nuisance….

As your loosing hair and this is frequently linked to low iron levels

email in request to GP for full iron panel test for anaemia including ferritin

Also include this link

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

Point out in writing that you have been left 10 months on only 25mcg levothyroxine.

Standard starter dose levothyroxine is 50mcg -100mcg

That you now have folate deficiency and need prescription for folic acid

Charlie-Farley profile image
Charlie-Farley in reply to SlowDragon

hi SlowDragon

This is the second person who has posted having been left on a CHILD’S starter dose for months, in a week that I have seen! Are theses cases in a specific area or spread - appreciate can’t share personal data in the forum but this may warrant further investigation. It is just appalling. It was what happened to me also. Thanks to you guys I’m well.

SlowDragon profile image
SlowDragonAdministrator in reply to Charlie-Farley

we get steady stream of people left on 25mcg….50mcg ….75mcg ……left sometimes decades …..

Think how many never find this forum

Totally ridiculous and inexcusable……because this is not a rare disease……just rare to be correctly treated

If the 2 million people in U.K., currently on levothyroxine were 90% male …rather than being 90% female……would the treatment be better?

Charlie-Farley profile image
Charlie-Farley in reply to SlowDragon

I have just an inkling it would- especially if it affected a certain hmmm’ drive !

SlowDragon profile image
SlowDragonAdministrator in reply to Charlie-Farley

and being hypothyroid definitely diminishes libido…..

Charlie-Farley profile image
Charlie-Farley in reply to SlowDragon

indeed- I won’t over share - but yep! 😂

Eeyore100 profile image
Eeyore100 in reply to Charlie-Farley

If you want a real battle try getting some testosterone prescribed! It certainly does the trick 😉💃

Charlie-Farley profile image
Charlie-Farley in reply to Eeyore100

😂 and a can of oil!

Feeling a bit rusty 🤪😂👍

Gingernut44 profile image
Gingernut44 in reply to SlowDragon

I think it’s about time there was a petition for all GP Surgeries to have at least a Nurse or GP who is conversant in thyroid disorders. Most surgeries have a diabetic nurse or GP who specialises in diabetes so why not thyroid, after all, there are more patients on thyroid meds than diabetics.

Regenallotment profile image
Regenallotment in reply to Gingernut44

I was started on 25mcg bloods tested after 3 months, told normal and retest in 12 months. It’s absolutely criminal what’s going on out there, life limiting symptoms and treatment withheld. I had a massive (and stressful) battle to get up to 50mcg but I got there with NICE guidelines and advice here and easy phone call to get to 75mcg. Just starting on request to 100mcg. So it continues 🦋💚🦋

Gingernut44 profile image
Gingernut44 in reply to Regenallotment

Well done for advocating for yourself - there are so many hypos who believe everything their GP/Endo tells them. Unfortunately, I was one of those people. I didn’t question them and only found ThyroidUK and this forum after the damage had been done 🤬

turquoisea7 profile image
turquoisea7 in reply to Charlie-Farley

I was started on 25mcg (and GP expected to leave me on it for life, thought I must have cancer if I needed any more). 3 GP's I have seen have all said, 25mcg is The Starting Dose and that those are the guidelines they are working from. (The only guidelines I've seen which say 25mcg are if you are over 50 and known to have heart problems, and nobody checked my heart before starting it!)

Charlie-Farley profile image
Charlie-Farley in reply to turquoisea7

you need to print off latest guidelines for them - idiots doesn’t Even begin to describe- terribly arrogant as well. One GP nearly pooped herself when I told her I was a doctor (science not medicine). They think we are all intellectually sub-normal. There are a hell of a lot of very intelligent people out there and some (like me) who might not be but have letters after their names. 😉

turquoisea7 profile image
turquoisea7 in reply to Charlie-Farley

Love this - my title is also Dr, it's one of the first questions they always ask, 'are you a medical doctor'? You can see the huge sigh of relief when I say no. It makes them feel safer momentarily but then when you wheel the brain out, oh dear... (have to admit this is tricky with brain fog, but still possible). I had one GP who was so pleased I was informed and knew what I wanted. But she left :-( facing next argument in a few weeks to actually get up to a bodyweight dose... wonder if they know such a thing exists?!

I feel, as others have said in a few places, it's deference that can be an issue. Because I'm not intimidated it doesn't concern me to argue (once I know my facts), & I find the concept of someone else having the power to keep me sick frankly horrifying.

Charlie-Farley profile image
Charlie-Farley in reply to turquoisea7

Turquoisea - on point!

Robinface

The one thing each GP could no understand was whilst I was ‘in range’ I was still symptomatic and not ‘normal’. They think all they have to do is drop kick you somewhere between the upper and lower range and think it’s good, nay better, if you are safely in the middle. If they but had a clue 🙄.

I have successfully argued that there is room in the range to accommodate another dose increase and be closer to the guide dose the NHS provides in their guidelines. I’ve also given them a couple good references to chew on and one is doctor Toft transcript which can be obtained through admin at thyroid UK. And de-bunk (predictive 🙄) the idea TSH is the most important measure. I overloaded them with info all relevant should they care to digest it.

Yep it’s amazing though to realise how easy it is to get ahead of them and yet still not know much 😂👍

Eeyore100 profile image
Eeyore100 in reply to Charlie-Farley

You are so right! I think we were once all considerably cleverer only to be dumbed down by our failing thyroids and left in a foggy under medicated world which is so hard to fight your way out of when under functioning

Charlie-Farley profile image
Charlie-Farley in reply to Eeyore100

Hi Eeyore100 😊

My brain kicked back in at 50 ug of levo and then I mercilessly harangued the doctors as each dose wore off. I got from 50 to150 in 25 ug increments in 8 months - it was a see-saw of ‘oh no I’m getting symptomatic’ to dose increase kicking in feeling good for a few weeks then dropping back. The last dose increase I just knew would sort me as each previous increase had meant I was not quite as bad as the previous time when the increase effect started to go.

I stayed very tuned to my symptoms and recorded significant symptoms or improvement on a month to view (importantly not daily) this I could compare to dose increases and blood results and look at everything in the round.

There were patterns and being able to include this detail was helpful.

Robinface profile image
Robinface

Hi I know how you feel, been on 25mcg for many years- tried writing to Gp, eventually got a face to face with a locum very condescending, just repeated himself ‘you are in range’ Its a battle I am losing, trying to summon courage and strength to try again!! I am with you in this battle!! Take care

Eeyore100 profile image
Eeyore100 in reply to Robinface

When I was in this situation I just increased my dose and told them I had.... they then increased my prescription.... it is such a ridiculous game we have to play 😡

Often the overlap in prescriptions leaves you with a little wiggle room to experiment 😬

turquoisea7 profile image
turquoisea7 in reply to Eeyore100

Same, problem is in that horrible bit where you need more but have to return the appropriate blood scores...hoping so much for a time I can get to A Functioning Dose and keep away from them all for a year...

Charlie-Farley profile image
Charlie-Farley in reply to Robinface

please read my profile turn the in range on its head! See above I also I’ll edit and tag you in.

kim1965 profile image
kim1965

It might be helpful for you to get all of your test results via the NHS app ..

Also ask for a full copy of your medical records .

I did this myself , and discovered that i had been undermedicated for two years !!

I spoke to my Dr and insisted that for the forseeable i have thyroid tests every 3 months until I start to feel better.

Wish you well

Charlie-Farley profile image
Charlie-Farley in reply to kim1965

I flagged I had been mismanaged and a few salient entries disappeared on my patient access . However unbeknown to them I had already taken screenshots. They play dangerous games. I get print outs all the time now. Untrustworthy.

GHughes2 profile image
GHughes2

just for the record Levothyroxine and others are not medications, they are a hormone replacement. Your doctor enjoyed wielding his power rather remembering ‘first do no harm’. Change your doctor 🤔

Robinface profile image
Robinface in reply to GHughes2

Changing doctors not an option here where I live, 1 surgery in our town- yes different drs but they stick together! Not allowed to be with another surgery in next town!

GHughes2 profile image
GHughes2 in reply to Robinface

Understood. The system often works against us.

Holibobble profile image
Holibobble

well I have had an update I spent several hours last night watching the seminar from when the NICE guidelines were released its on YouTube as I had an appointment this afternoon to discuss my menopause on the phone again. I took several pieces of advise from many of you firstly I was more determined I decided to go and ask for a trial increase I stated the guidelines with mg versus Kg for the meds and said about treating the person and not the numbers on the screen he agreed with that but was very reluctant he said he could get into trouble for it as it was the head Dr that fobbed me off last time and really it was going against him even though he was an independent GP. He looked up the guidelines whilst we were talking then he said OK we will try it but you will have to book in with me every 4 weeks and then test my bloods in 8 weeks as long as I feel OK so Thanks to everyone who contributed I really hope it does improve my symptoms and it isn’t the menopause 😜

Charlie-Farley profile image
Charlie-Farley in reply to Holibobble

Holibobble, thrilled for you.

Keep the pressure on GP - tell him if he fails you it will be his ass on the line not the bossy one who wouldn’t give you a dose increase. He needs to give his head a wobble. So weak and ineffectual 🙄

SlowDragon profile image
SlowDragonAdministrator in reply to Holibobble

well done 👏👏👏👏

Which brand of levothyroxine are you currently taking

Ideally don’t change brand as you increase to 50mcg

How many 25mcg tablets have you got at moment

Suggest initially you cut a 25mcg in half and add this for 2-4 weeks (so 37.5mcg per day) ….before increasing to 50mcg daily

Meanwhile get access to you medical records on line

Ring receptionist and ask for online access including blood test results

Find out exactly how low vitamin D was before loading dose was prescribed

You need to retest vitamin D yourself now ….see what level is

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

You will need ongoing maintenance dose daily of vitamin D

Trial and error what dose is needed…..likely at least 2000iu daily…..but could need higher dose

Holibobble profile image
Holibobble in reply to SlowDragon

I think I get different brands from boots Mecucre pharma but I tend to throw out the boxes but I’m collecting my prescription over the weekend so can post what they are he would only give me 2 extra months of 25 and just said to take 2 each day I think he’s just getting around the increase as if I lost the prescription he definitely didn’t want to give me 50 mg dose separately

Regenallotment profile image
Regenallotment in reply to Holibobble

my Drs did this too, I’m on 3x25mcg tablets a day. It works quite well so you can increase slowly like every other day for a week and that helps not ease into the next dose.

Holibobble profile image
Holibobble in reply to SlowDragon

what difference would it make not to go up to the 1 and a half ? Would it make me feel worse jumping straight to 50 mg

SlowDragon profile image
SlowDragonAdministrator in reply to Holibobble

if left very under medicated too long….yes it’s a shock to “double the dose”

Hormones are tricky things……slow and steady wins the race

SlowDragon profile image
SlowDragonAdministrator

Did GP prescribe folic acid for folate deficiency?

Holibobble profile image
Holibobble

no I decided to quit whilst I was a head

SlowDragon profile image
SlowDragonAdministrator in reply to Holibobble

probably wise 😉

What vitamin supplements are you currently taking

Vitamin D - how much and which brand

B12 ?

Folate deficiency

Suggest you start adding vitamin B complex rather than folic acid or 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 

chriskresser.com/folate-vs-...

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) 

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 and continue separate B12

Low B12 symptoms 

b12deficiency.info/signs-an...

With 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.

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 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

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

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...

Holibobble profile image
Holibobble in reply to SlowDragon

I was taking vit D 25pg (high strength on bottle Morrisons) was the same as expensive ones but switched to a complete women by boots after the GP said switch to a multi vitamin

SlowDragon profile image
SlowDragonAdministrator in reply to Holibobble

Really wan to stop the multivitamins

They contain cheap poorly absorbed ingredients

Most likely also contains iodine not recommended for anyone on levothyroxine

Vitamin D

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 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...

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...

come back with new post once you get vitamin D test results back

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