help with diagnosis : Hi, why would one doctor... - Thyroid UK

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help with diagnosis

Denny39 profile image
82 Replies

Hi, why would one doctor diagnose subclinical hypothyroidism and suggest medication with a TSH of 6.5 and I feel dreadful and then another from the same surgery say there is nothing wrong with a TSH that high and they should only treat over 10 ?? Conflicting advice and I already feel really anxious and not well.

82 Replies
SlowDragon profile image
SlowDragonAdministrator

First doctor is correct

2nd doctor is out of date

With TSH over 5 (on two separate tests) and symptoms you should be prescribed levothyroxine

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Sub clinical refers to Ft4 still being within range

Denny39 profile image
Denny39 in reply to SlowDragon

Thank you.Do you know why I have anxiety and feel so emotional every day? Is it due to thyroid?

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Yep….anxiety and panic attacks extremely common with Hashimoto’s when under medicated …..because adrenals try to compensate for lack of thyroid hormones….tired and wired, anxious, exhausted and poor sleep

Getting dose levothyroxine increased slowly upwards until high enough, with Ft4 at least 60-80% through range

Test all four vitamins and improved to optimal levels will help too

You may find cutting gluten out also reduces anxiety (can help improve absorption of levothyroxine in gut)

How much levothyroxine are you currently taking

Are you now back on 50mcg levothyroxine

Which brand

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

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

Denny39 profile image
Denny39 in reply to SlowDragon

This is the brand, it’s north star. They told me to take 25mg for 4 weeks and then retest bloods as I have anxiety so they don’t want to increase the dose too much.

My B12 was 320. Do you think this is low?

My vitamin D was low but I take 1000 tablet each day.

I also thought about taking selenium and magnesium. What do you think? How much of these should I take?

I got tested for addisons and I don’t have that and I got tested to see if I react to gluten and I don’t, but I have been cutting out gluten due to antibodies being 300.

Meds
SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Northstar 25mcg is Teva brand

Teva upsets many people

Request different brand.

Mercury Pharma by Advanz makes 25mcg, 50mcg and 100mcg tablets

Or

Wockhardt only make 25mcg tablets

But 25mcg is too small a dose

Standard starter dose of levothyroxine is 50mcg

Starting on too low a dose frequently makes symptoms worse

You have already been left too long on just 25mcg

Yes B12 is too low

Have you had folate level tested or iron and ferritin

What was vitamin D result

1000iu is only a maintenance dose

You likely need at least 3000iu daily

Is this vitamin D tablet or mouth spray?

Are you currently taking any magnesium supplements

Denny39 profile image
Denny39 in reply to SlowDragon

Thank you.

I tried to search the internet, I think the wockhardt one is a green packet. Is this correct? And the mercury pharma in a blue packet? Can I also ask you your thoughts are on Synthroid?

Do you know what symptoms teva can cause to upset many people?

I have had a coeliac blood test last year and I am not coeliac. Should I still cut out gluten?

Regarding vit D - will I just take x3 1000

Tablets each day instead of one or should I ask my doctor for x1 of 3,000 ?

My folate was 5.8. Is this low? I have not been advised to take any supplements. Do you think I should? And what dosage?

Ferritin was 50. Is this low and do I need a supplement and what dosage?

I can’t see my iron been tested on bloods.

I am not taking any magnesium supplements.do I need too?

Thank you for all your help 💕

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Levothyroxine brands

Photos

Wockhardt

alamy.com/stock-photo-a-pac...

Mercury Pharma (Advanz)

alamy.com/stock-photo-a-pac...

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Vitamin D

What was your result before supplementing

Suggest you buy your own

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

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 CCG 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 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...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Denny39 profile image
Denny39 in reply to SlowDragon

They have not tested my vit D since supplementing even though I know it was requested and when I asked last time they said they missed it off in error. They are hard work.

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Test vitamin D yourself

Once a year with thyroid levels and other vitamins via Medichecks or Blue horizon

Once via NHS vitamin D test service

Denny39 profile image
Denny39 in reply to SlowDragon

Can I summarise what I need to take:

Vit D drops to get to correct level then reduce to a maintenance level. Do you know the level I am aiming for?

B12 drops to include folate or a tablet form. Then once B12 is correct level just take a B vitamin?

Increase food with ferritin.

Introduce each one in 10-14 days after the last.

I have just started levo again so I will wait another 2 weeks before I start anything else.

When I was off all the thyroid meds I was getting pins needles and a funny pain in legs / feet. Is this common? Hoping this clear now I am back on meds.

Can I ask if you are on levo? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Basically yes

Test vitamin D, see what level is now.

Vitamin D mouth spray with vitamin K2 Take at least an hour away from levothyroxine

Aiming for vitamin D at least around 80nmol minimum

See my previous detailed reply on vitamin D

Folate and B12

Thorne Vitamin B complex that has folate in and (initially) a separate B12 as well. Once B12 result is over 500. Just continue with vitamin B complex

Vitamin B complex and B12 best taken after breakfast as are energising

Magnesium best afternoon or bedtime as relaxing

Minimum 4 hours away from levothyroxine

Pins and needles common hypothyroid symptom and/or low B vitamins

Likely to need several further increases in levothyroxine over coming months. Unless extremely petite likely to be on at least 100mcg levothyroxine per day minimum

Denny39 profile image
Denny39 in reply to SlowDragon

Thank you for everything. I have just been reading your profile, you have been through a lot. What age did you get hashi / thyroid problems? I have just turned 40 and I’m feeling very overwhelmed / upset about my future and managing all of this. Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

I had tonsillectomy age 4 (dramatically increasing risk of autoimmune disease)

Was unwell, but not aware, from probably age 12 onwards

Fortunately diagnosed by very on the ball GP age 34. (29 years ago)

TSH 7

Highest thyroid antibodies ever seen

By then was wearing 4-5 jumpers even in summer.

I thought that was normal!

Given levothyroxine….and collapsed …..long slow haul working out what worked …what didn’t

After 5 years Tried NDT (definitely didn’t suit me)

Only made significant progress when joined this forum in 2014/15

Gluten free

Optimal vitamin levels essential

Denny39 profile image
Denny39 in reply to SlowDragon

I think I’ve had mine a long time but never knew. Possibly brought on my stress - is that possible? What’s happened when youCollapsed, did you increase The meds? How did you find working after diagnosed?

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Stress is big driver of thyroid disease. I had lots of stress growing up. But was happy and settled when diagnosed

Obviously when really poorly on just 50/75mcg levothyroxine I couldn’t work.

Under endocrinologist…..Dose levothyroxine slowly increased to 125mcg. High Ft4, mid range Ft3, very low TSH …….managed ok on just levothyroxine for roughly 20 years. Interesting but fairly stressful job

Early retirement 2011 ….….coping with mother with dementia living 250 miles away. A nightmare.

Joined forum…got full testing…saw low vitamins

By then walking badly affected. Wasn’t going back to wheelchair

Private endoscopy and gluten free diet a revelation

T3 prescribed alongside levothyroxine a year later

NHS agreed to fund as private Dio2 gene test was positive

Denny39 profile image
Denny39 in reply to SlowDragon

Did you change jobs during the period when you could / couldn’t work or just take some time on the sick?

The NDT armour make me very sick - I stopped levo and only took armour for 7 days. I had diarrhoea, sweats sickness, anxiety, agitation. I lost a stone in one week.

That was nearly 4 weeks ago and I still have the anxiety with me from the armour. I am not sure if I will be able to take t3 in the future due to me taking a bad reaction to the armour.

Did you take all the vitamins when first diagnosed or have they been a more recent addition?

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

I didn’t take any vitamin supplements until 2015 after getting full thyroid and vitamin testing done privately

You don’t need to think about T3 …..it will take at least 12-18 months to get dose levothyroxine increased, fine tuned and all vitamins optimal

Denny39 profile image
Denny39 in reply to SlowDragon

Tbanks. I don’t know why I was changed to armour from the endo, I was on the levo path before and now I’ve been knocked back to the start of my journey. I’m so pleased I have met you.

Denny39 profile image
Denny39 in reply to SlowDragon

Do you ever drink any alcohol or did you have to stop completely?

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Yes…definitely like a drink now ….and coffee, tea

But couldn’t tolerate any alcohol or caffeine or chocolate on low dose levothyroxine……didn’t improve until on about 100mcg levothyroxine

Denny39 profile image
Denny39 in reply to SlowDragon

That’s good to hear 😆

Denny39 profile image
Denny39 in reply to SlowDragon

Can I ask which vitamin D and magnesium you take? And what your maintenance dose is now? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Everyone is different as to how much they need of vitamins and replacement thyroid hormones

You can read my profile info

I need high dose vitamin D….Hashimoto’s and gluten intolerance and genetic vitamin D issues

I need 4000iu vitamin D daily in summer, and as much sun as possible

5000iu in winter, plus winter sunshine holiday

I had to learn what I needed over 4-5 years….testing twice year

I use Better You vitamin D mouth spray with vitamin K2

Magnesium…used a variety over the years

Currently taking Thorne magnesium capsule

(I tip powder out into cup of water)

Denny39 profile image
Denny39 in reply to SlowDragon

Will you send me the link of the Thorne magnesium capsule you take. Will I need to take this? Also do you not need to take a B vitamin no more? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Thorne

amazon.co.uk/Thorne-Researc...

Like many (most?) thyroid patients I need vitamin B complex and vitamin D daily to maintain good folate, B12 and vitamin D

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Low folate and low B12

NHS only tests and treats vitamin deficiencies

Down to us as individuals to self supplement if within range, but too low

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 sublingual lozenges

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

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

B12 drops

healthunlocked.com/thyroidu...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Denny39 profile image
Denny39 in reply to SlowDragon

Will this contain folate?

Photo
SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

No ….it’s good …but it’s just B12

you need Thorne vitamin B complex as well

Denny39 profile image
Denny39 in reply to SlowDragon

Is this it? Do I not need the b12 drops if I buy this?

Photo
SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Yes …while your B12 level is below 500 you are likely to benefit from taking separate B12 as well as vitamin B complex

Retest thyroid and vitamin levels after 6-8 weeks

If B12 result is over 500

(or private testing over 70 Active B12 test)

Then just continue with vitamin B complex

Test folate, ferritin and B12 at least once a

Test vitamin D twice year

Denny39 profile image
Denny39 in reply to SlowDragon

Will I introduce a vitamin in a couple of weeks once I am on the levo for a few weeks as just started again today or will I wait 4-6 weeks to introduce a vitamin? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

I use this vitamin B complex I can’t swallow anything bigger than a pea

So tip powder out onto my hand and swallow with water

Week before blood test (when stop vitamin B complex)

I use Jarrow methyl folate 400mcg and the BioActive B12 drops

Denny39 profile image
Denny39 in reply to SlowDragon

Will you send me the link for the jarrow methyl folate? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

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

Probably cheaper on Amazon

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Ferritin is ok, but aim to maintain over 70 minimum. Around 100 may be better

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia.

It’s possible to have low ferritin but high iron

Medichecks iron panel test

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Good explanations of iron

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Only make one change at a time

Then wait at least 10-14 days to assess before another

So adding one supplement at a time

Or increasing dose levothyroxine or changing brand levothyroxine

Lastly, consider trialing strictly gluten free diet

Only 5% of Hashimoto’s patients are diagnosed as coeliac, but approx further 80% find strictly gluten free diet helps or is essential

Greengirl68 profile image
Greengirl68 in reply to SlowDragon

My TSH Jan 22 was 10.67 now Aug 22 is 14.65, do you think they will put me on levothyroxine to bring number below high value of 4.65

SlowDragon profile image
SlowDragonAdministrator in reply to Greengirl68

Please start a new post of your own

Give some background info

But yes…..if TSH is over 5 after 2 separate blood tests….done 6 weeks apart you should be started on at least 50mcg levothyroxine

Bloods should be retested 6-8 weeks after each dose increase

Get vitamin D, folate, ferritin and B12 tested and thyroid antibodies too

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts you have had high thyroid antibodies confirmed?

Essential to test vitamin D, folate, ferritin and B12

Have you had these tested

Also coeliac blood test BEFORE considering trial on strictly gluten free diet

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.

DippyDame profile image
DippyDame

Stay clear of the one who states they only treat with TSH over 10!! Sounds as if he missed the thyroid lectures in med school!!

With TSH 6.5 it's not surprising you feel dreadful....and need medication

Ideally we have a full thyroid test...

TSH, FT4, FT3, vit D, vit B12, folate , ferritin and thyroid antibodies TPO and Tg

TSH when not medicated should be 2 or under

And, If medicated ....closer to 1 or under

So 6.5 is a red flag for hypothyroidism

Starting dose 50mcg then retest after 6/8 weeks then adjust dose according to test results

Post results with reference ranges here if you wish further advice

This might help

thyroidpatients.ca/2021/07/...

thyroiduk.org/if-you-are-hy...

Suggest you speak again to the GP who would medicate.

Good luck

SeasideSusie profile image
SeasideSusieAdministrator

Denny39

It's so annoying when doctors give different opinions like this and it can cause problems for the patient.

About a year ago I had to go to the surgery due to one of my episodes of sporadic tachycardia, on my record and well documented by the Advanced Nurse Practioner who was so good I saw him for everything so he knew me and my history. After the ECG was taken to the duty GP he came in and demanded I reduce my dose of Levo because it was causing the tachycardia (in his opinion).

I explained I'd had quite a few episodes over the years and it wasn't anything to do with my thyroid or my dose of Levo. GP insisted it was because my last test (which was about a year old) showed "overmedication" (ie TSH suppressed). I told him that if he checked he would see that my TSH had been suppressed for as long as I'd been at the surgery and never comes into range. He then said my FT4 was high so I was overmedicated. I told him that test was done without prior warning and I'd taken my dose of Levo and that it was reflecting that, and the ANP told me to always do my test early before taking my Levo. I also said he shouldn't be adjusting my dose on tests that were a year old. GP went into rant mode, shouted "I'm not XXX (ANP)" and was I going to reduce my dose. After the 5th time of me refusing he walked out of the room and left me there.

I managed to speak to the ANP a couple of days later to explain all this, he reviewed everything, said don't worry about your thyroid because you're on top of that, but we're going to change your BP meds to a beta blocker which should help with the tachycardia.

Suffice to say the ANP was right and the GP was very wrong.

Denny39 profile image
Denny39 in reply to SeasideSusie

Big mistake if you listened to the GP you could have been poorly. It’s terrible what goes on.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Denny39

Indeed!

All the good GPs have left, taken early retirement. There used to be one whose special interest was lungs, another was skin, another was eyes, etc. You knew which one to ask for. And if one of them didn't know enough about a certain thing they had a colleague they could discuss it with. And you could get a face to face appointment back then!

My son did some work for one of the retired GPs (who was an absolute pig at the surgery but knew his stuff!) and they got on like a house on fire. The retired GP still owns the building and the current GPs rent it off him but wont buy it (don't want to "commit" 🙄). The retired GP told him that the current GPs are hopeless, know very little between them, and "if ever your mom needs a xxxx specialist then xxxx is her man".

One of the current GPs is well known for saying "I don't know what it is, come back in two weeks if it doesn't clear up", so you go back in a few weeks because it hasn't cleared up and you still get "I don't know what it is, come back if it doesn't clear up". This is the one who wanted me to reduce my dose of Levo because he said it was causing the tachycardia! He told a friend of mine who was haemorrhaging from a newly fitted ill fitting ring pessary "What do you want me to do about it". Just about sums him up!

Sparklingsunshine profile image
Sparklingsunshine in reply to SeasideSusie

Hi

I remember my husband had a consultation with one GP, who Googled his symptoms in front of him, shrugged and then printed off what he had been looking at. Which we could have done at home.

My husband was not happy, as he said if that's all there is to being a GP why are we paying them so much?

Charlie-Farley profile image
Charlie-Farley

Hi Denny39

Welcome to the forum. You are now under no illusions as to the state of affairs. Best advice comes from lived experience (vested interest). We get far more time to research than a GP - general practitioner (clues in the name) 🤣

Brilliant advice from SlowDragon and re getting onto full therapeutic dose whilst potentially ‘in range’ but symptomatic read my profile- it gives clues as to the lack of ability of GPs to interpret blood results (in the main). They calibrate the patient to the blood test, but they should calibrate the blood test to the patient. Big difference! Don’t humour GPs or any doctor for that matter - it will not help.

Start reading for your own health - be your own advocate. It means a lot of reading, but it’s worth it. Reading other’s lived experience has to be one of the most valuable sources.

Good luck with the journey 😊👍

Denny39 profile image
Denny39 in reply to Charlie-Farley

I cry a lot at the minute for my old life and wish I never put myself through the stress I did, but too late now. I’m only being treated with 25mg at the moment.

Charlie-Farley profile image
Charlie-Farley

We could be twins Denny39

I cared for parents, dad 7 years mum 10 with support of hubby and ‘bought in’ care but that still meant sleep deprivation and crazy juggling work commitments with care - a decade of self neglect and then looking in the mirror and seeing this grey haired creature staring back at me.

I literally didn’t recognise myself. In the last 2 years I have grieved for the person I was - I didn’t even notice her go…. But I’m becoming acquainted with this estranged self, becoming used to her. When I look in the mirror I do see me.

They have put you on a starter dose for a child- that did that to me. Getting on a full therapeutic dose is critical. If you have read my profile you will see I have successfully argued (sometimes literally) for a full therapeutic dose whilst in range and best of all it did it over the phone with all my notes around me so I could counter any BS from doctors who don’t have a clue. This is so much better than sitting by ‘the big desk’ in the consultation room. Thankfully the last two doctors seemed to either sense I might just have a clue or I so overloaded them with information they couldn’t be bothered to argue 😂👍 putting in an 8 page report prior to telecon appointment worked a treat for me.

Sending hugs 🤗

Denny39 profile image
Denny39 in reply to Charlie-Farley

What dose do you take now? I am subclinical so I think my full dose would only be 50mg or 75mg as I am only 8 stone. I wasn’t sure whether to start on 50mg, but I have started at 25 as per the doctors advice. Do you know if tirosint is available in the U.K.?

Sorry to hear about the stress you went through too, we put so much on ourselves and end up poorly in the end from it. I wish I was laid back like others then this wouldn’t have happened.

Denny39 profile image
Denny39 in reply to Charlie-Farley

Can I ask what your TSH was when you wereLeft on 25mg? Mine was recently 6.7 before being on 25mg levo and off meds for 3-4 weeks.

I originally took 25mg for 6 months and was similar to you was left and instead of increasing to 50mg levo my endo doctor decided to change to armour (not sure why) but his reason was I was not converting t4 to t3 but I don’t know how he could say that when I was only giving 25mg levo at the time. Anyhow I took armour for 7 days and it give me an autoimmune reaction and I went hyper. I was then told to stop all meds for 3-4 weeks and I went back from hyper to hypo. I was desperately feeling unwell stopping meds and went back to my GP in distress who did bloods and said my TSH was 6.7 and for me to immediately start on 75mg levo but the endo said no only start on 25mg (conflicting advice). I started on 25mg as I am so worried about going hyper again and feeling the way I did. I am still feeling some of the hypo/hyper symptoms now after the experience I have had and I feel very unwell. I hope my body settles soon. I am hearing from groups it might be a 6 month recovery. I want to feel well again 🥲

Charlie-Farley profile image
Charlie-Farley

Hi Denny39

So who ever put you on 25ug and left you on it was an Arse. It is a replacement therapy you need to be titrated up to a full replacement dose what that will be is totally individual. - You are not being ‘topped up’’. The NHS guidelines are 1.6ug per kg of body weight (repeating all this in my profile). So you can calculate roughly what you should be aiming for. If you read my profile I explain how it got there 😊👍

I’m going to add all my results to date to my profile - remember I’ve calibrated the blood results to my wellness, not my wellness to blood results.

MOST Doctors treat the lab work, not the patient. ‘You should be well your blood results are all in range’. They fundamentally do not understand how to use these results in concert with your symptoms. Amazing 🥲. Amazingly Sad!

Denny39 profile image
Denny39 in reply to Charlie-Farley

Someone I know who has autoimmune & a TSH of 3 said they treated there thyroid with supplements instead of levothyroxine or other thyroid meds. This brought there TSH down to 1.5 and they feel well. There doctor told them if they took thyroid meds the thyroid would stop working & they would need them for life. Do you know if this is true or not???

Last May by TSH was around the 3 and when it got to 4.9 the doctor decided on treatment. Do

you think if I just took supplements it would have been better?

Charlie-Farley profile image
Charlie-Farley

I believe if you have antibodies you have Hashimotos or Ords and if you were symptomatic getting treated would potentially save you a lot more suffering later. I can look back over my medical records and I had symptoms for about ten years, I can now attribute to having an underactive thyroid - for instance I had plantar fasciitis - insoles, excruciating pain - all gone once I got to a therapeutic dose.

I found it really hard to accept lifelong hormone replacement at first - until I felt better! - I do not consider it as medication as it is non negotiable - I have to take it. I don't have to take statins or painkillers. I have got my head round it now.

The people I feel sorry for are those who have been denied treatment for decades and then have Adrenal or other complications develop and I would say if you read on here, others lived experience and I really would recommend that you do, you will see the longer it is left the harder it is to get to the 'sweetspot'.

I've posted all my results to date on a new post so you can see where I was ill and where I was well

FEB 21 was 6 months on 25ug of levo - a total low spot (see profile)

AUG 22 - sweetspot - the two states of being are poles apart.

Thank goodness for this forum!

Denny39 profile image
Denny39 in reply to Charlie-Farley

Thank you for sharing those results, ifs good to see. When I was originally on 25mg last year, my T3 was only at the 3 mark and the doc thought I was struggling to convert which is why he changed to armour. I am back to square one now though and I’m going to plot my results as you have - thank you.

How did you find working when you were going through your bad time? Did you have some time off or continue?

Charlie-Farley profile image
Charlie-Farley in reply to Denny39

Hi again Denny39

We run our own business and luckily (if you can say that) my crash happened in the winter lockdown. I was incapable and hubby looked after me for about 2 moths before being upped to 50ug and for at least two months after.

Your Dr/Endo never even gave you a chance on Levo before b***ering you about on armour. How the hell could he tell if you were converting or not before you were on something approaching a theraputic dose???. They are a total 'dud'.

I have a friend who is 4'11" and 6 1/2 stone and she is OK on 75ug of levo. I'm slightly under 15 stone now but doing well on 150ug. The 'dud' expected miracles by putting you on 25ug??? child's starter dose. Please, I urge you get genned up and do not rely on doctors to get you well. So worth the effort .😀

I had cognitive issues, depression, massive anxiety and constipation and heartburn etc - all in my profile won't repeat everything here. Symptoms fell away as doses increased.

Keep a log on a month to view calendar as well, how you feel, symptoms (all relevant) helps you to recognise when a dose increase kicks in and you start feeling well (hopefully) and if/when the effect peters out and you need another dose increase. Few key words will do - war and peace not necessary

Everyone should be enouraged by doctor to do this but it's beyond their ken.😂

Denny39 profile image
Denny39 in reply to Charlie-Farley

Will do - thank you for all of that. Do you think I should increase now to 50mg? Or wait 4 weeks then increase? I only started again on 25 for the last 4 days.

I can’t believe the doctor changed me either, i must have been an experiment. I didn’t do any research then, but have done lots now.

Thanks

Denny39 profile image
Denny39 in reply to Charlie-Farley

Sorry, do you take vitamins too? Thanks

Denny39 profile image
Denny39 in reply to Charlie-Farley

Can I also ask, did you have brain fog while you were not optimal and any anxiety while increasing the meds? Thanks

Charlie-Farley profile image
Charlie-Farley

Hi Denny39 I’m not sure about a dose increase after only four days even though it is a kids starter dose - you are smaller than I so only you can judge but don’t leave it too long as the lower doses you tend to feel cr*py on. Work out your ball park optimal to aim for but remember- it is a guide- your symptoms are the most important. And yes take vitamins as advised here and gluten-free and reduced lactose intake feel better for it.

Had brain fog and the works until on optimal dose if Levothyroxine

Denny39 profile image
Denny39 in reply to Charlie-Farley

Thanks. I already have bradycardia from being hypo. Heart drops to 40’s when I try to sleep. Will I be ok??

Charlie-Farley profile image
Charlie-Farley in reply to Denny39

If you read - and I am stressing start to read - NHS symptoms of hypothyroidism state low heart rate. The guest who told me I was hypo said I would have a low heart rate. My heart rate was 52 bpm after glugging coffee and doing an early stint in the breakfast kitchen. God knows what the resting heart rate was 😱 so if you are hypothyroid and not adequately medicated that will only make things worse. I have never had my heart rate taken by NHS 😱 and it’s in their own guidelines!

I believe some people’s slow heart rate improves with medication and some don’t it is an individual thing, SlowDragon or shaws might be able to give a clearer answer

Denny39, read the NHS info then read the better sources - thyroid UK website , all the links to info you have been given then read some more. I cannoli stress enough- we can only give four lived experience you will find when reading there will be things that resonate and you will build a picture of your own situation. 😊👍

Denny39 profile image
Denny39 in reply to Charlie-Farley

Thank you.

My GP is advising today to increase to 50mcg today and the private endo is advising to wait 2’weeks from starting 25mcg and then increase. Not sure who to go with??? What do you think?? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Suggest you wait at least 2 weeks on 25mcg ….then increase dose SLOWLY up to 50mcg daily

Initially you can cut a 25mcg in half to get 37.5mcg…..initially 25mcg and 37.5mcg on alternate days….and then 37.5mcg every day

After 3-4 weeks on 37.5mcg daily…..then increase to 50mcg and 37,5mcg alternate days…..before increasing to 50mcg every day

You may find you can increase quicker

Retest after 6-8 weeks on 50mcg daily

Will need further increase after next blood test to 75mcg

Retesting again 6-8 weeks after that

It can be difficult to tolerate increasing levothyroxine, having been left ridiculously under medicated far too long

Meanwhile working on improving low vitamin levels helps tolerate levothyroxine better

You don’t need to even think about T3 until on full replacement dose levothyroxine and all four vitamins are tested and optimal

Majority of thyroid patients manage fine on correct dose levothyroxine

Denny39 profile image
Denny39 in reply to SlowDragon

Thank you so much for that - really appreciated. I am so glad I found this group everyone has been so lovely and so helpful.😊

I purchased some vitamin D drops and some magnesium oil body spray. Will the body spray work as well as the tablets? I am waiting 14 days after being on levo before I introduce the vit D drops. I am still taking the 1000 vit d tablets until I change as took these for a year now.

I am going to purchase b12 drops and b vitamins containing folate like we discussed but I will introduce one at a time 10-14 days after adding vit d drops etc. Do you think the b12 will give me any anxiety? I heard this possible can.

I am going to eat more liver etc to increase ferritin. And I am eating 3-4 brazil nuts eat day to help with selenium.

Thanks x

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Which vitamin D drops?

Personally I don’t like magnesium oil on skin

Magnesium flakes from Better You in bath are nice ….once a week

Denny39 profile image
Denny39 in reply to SlowDragon

These are the drops. What do you think? Thanks

Photo
SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

Looks ok

Not tried it myself

Test twice yearly when supplementing

vitamindtest.org.uk

I use this

Vitamin D mouth spray by Better You

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...

Denny39 profile image
Denny39 in reply to SlowDragon

My doc was supposed to test vit D on my last bloods but they missed it off the labs in error. I will ask again on next bloods as I have been supplementing with the 1 tablet of 1000 for about 10 months.

Will you send me the link of b12 you used?

Thanks

Denny39 profile image
Denny39 in reply to SlowDragon

Is this the Thorne magnesium you take or is this folate? Thanks

Photo
SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

That’s folate

Denny39 profile image
Denny39 in reply to SlowDragon

Is this the magnesium you take? Thanks

Photo
SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

No

This one

thorne.com/products/dp/magn...

I tip the powder into glass of water

Magnesium must be minimum 4 hours away from levothyroxine

Denny39 profile image
Denny39 in reply to SlowDragon

Thank you.Can I ask you if all of your bones used to crack before you were optimal? This just started on me when I didn’t do well on that med and was left without meds for 3-4weeks. I hope it settles soon.

Denny39 profile image
Denny39 in reply to Charlie-Farley

Do you not take any T3 meds? Thanks

Charlie-Farley profile image
Charlie-Farley

Have a look at current NHS guidelines. Have a think about how you feel if the 25ug is not improving things your Doctor may be right about getting you onto 50ug and use that as a baseline. This is a decision you can only make based on your symptoms- you are under medicated at present. Have you worked out your potential therapeutic dose? I only really started to feel better when close to my optimal though I did notice an improvement as I worked up the increases (feeling less awful).

Not everyone needs to take T3 to feel well- but it might be after a period of time on replacement I may need to look into this - thyroid produces a little T3 directly as well as T3 being converted in cells in the body.

Anyway that’s getting into it a bit too much. Ok for now and some never need addition of T3 - we are all different. Some have Genetic resistance, other confounding health issues - we are all different.

Denny39 profile image
Denny39 in reply to Charlie-Farley

52kg x 1.6 = 83.2. Does this mean my optimal dose of Levo will be about 83.2 ??

I’ve only took the 25mcg for 5 days now. I had

Tingling pains in legs/feet which I feel are improving. I was very emotional at desperation point which I feel has improved but very slightly. I still have anxiety and feel like I can’t concentrate/focus but I hope this comes back soon. I am off work and they hate sickness at my work but I’m very poorly to work at the minute.

How long does one dose take to work - is it days or weeks?

Thanks x

Charlie-Farley profile image
Charlie-Farley in reply to Denny39

I noted a difference in a few days and the effects wore off a little when I needed a dose increase. Tingling can be under medicated and low vitamins more than one thing can cause a symptom so important to get vitamins optimal too.

Really important to note down your observations. You can go in smaller steps if you are worried splitting the increases. This is an individual journey - I’m bigger than you and pushed them hard and fast to get to my therapeutic dose but this was motivated purely by my symptoms. Some people are more sensitive.

Re- read the string of responses here on your post there is so much info you need to start working through.

Good luck with your appointment 😊👍

SlowDragon profile image
SlowDragonAdministrator in reply to Denny39

It takes 6-8 weeks for each dose to have full effect

Typically small improvements start 10-14 days after any dose change…..then as you near 6-8 weeks symptoms start to reappear, indicating your ready for next dose increase in levothyroxine

Pins and needles is extremely common after stopping levothyroxine and then restating …..it will fade

Denny39 profile image
Denny39 in reply to Charlie-Farley

Sorry can I ask if b12 causes anxiety/panic. I have not took this vitamin yet but I am hearing from others it can cause this?? I took 1 tablet maybe a year ago and felt anxiety/panic during the night but it might not have been this. Is the drops better than the tablets? Thanks x

Charlie-Farley profile image
Charlie-Farley in reply to Denny39

I Have not experienced this but you need to start reading round these issues to get a handle on things - I believe some nutritional deficiencies can cause depression and anxiety. Sometimes you have to be careful of the fillers they use to make the supplements SeasideSusie and SlowDragon regularly post on this. loads of info on this site 😊👍

shaws profile image
shawsAdministrator in reply to Denny39

I have never had any unpleasant symptoms taking B12.

I also have pernicious anaemia which means I have to have regular B12 injections. I used to get an injection every 3 months but GP told me I can have as many as I feel I need (my mother - now deceased also had pernicious anaemia). I believe my mother's death was due to her GP telling her that her blood tests were fine and she no longer needed B12 injections).

I also believe the advice given to her by GP caused my mother to develop stomach cancer that caused her early demise.

Aurealis profile image
Aurealis

Choose which doctor / opinion you prefer and always see that doctor from now on. What a nice position to be in 🙄. But if you feel poorly, the second doctor is bad news. Welcome to the (doctor-induced) fog of thyroid disorders. Good luck.

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