GP agreed to raise levo dose. I'm amazed really.

[Sneedle]

Hello all,

I'm still a bit in shock as twice in the last week I've spoken to the same GP who was insisting my bloods were normal and not wanting to look further.

I've just had a face to face at his request (because of all the symptoms and background I detailed in my letter) and he has agreed for me to go up to 100mcg😀.

We had a discussion inc. the NICE draft guidelines regarding B12, which my husband hand delivered to the surgery last night, with another letter from me about how I am.

He had had a meeting by chance this morning with the Health Board and had enquired but been told that MMA testing was not done. He evidently tried to find out more so that is a good sign for the future.

Despite saying my Active B12 60.4 was not low, he mentioned B12 once a month shots to see if that helps my symptoms. So did go by my symptoms!

I asked him what he thought best to try first, and he said thyroid.

We agreed after some discussion that I will not take any extra B12 or Folate for 8 weeks and then retest (he was even happy to have Medichecks tests) as he would like to see how I do on levo increase alone, to see if my folate/B12 rise with just the levo. He left it up to me to decide.

I know generally on the forum the suggestion is to supplement to keep these two up (plus ferritin and D) but I would like to know how I do, so going with that until the next test.

SlowDragon thank you so much for your 11th hour help and getting back to me on the levo.

And all of you who have shared your experiences and made suggestions to me so far.

THANK YOU.

I honestly did not expect such an outcome. I do believe writing it all out respectfully and making sure he had everything prior to the appointent made all the difference.

I will now go 'next door' and thank the PA group😀

🌸

[helvella Administrator Thyroid UK]

You can't even trust GPs to be consistent!

I think what you have done is show that careful research and preparation can help. A lot.

Further, it is obvious that if you have managed to convert the view of a GP, that could well end up helping all his future patients.

[Sneedle in reply to helvella]

Ha quite😄

I do hope so. He was certainly interested and I could see he was thinking it through.

[SlowDragon Administrator]

and he has agreed for me to go up to 100mcg😀.

Brilliant

Which brand levothyroxine are you currently taking

Stay on same brand levothyroxine at increased dose

Retest in 6-8 weeks

How long were you taking vitamin B complex before you stopped for Medichecks test?

[Sneedle in reply to SlowDragon]

I'm on Teva.

I think I was about three months on the Yipmai B complex. I can't tell with B12 because I changed form Serum to Active testing, but Folate definitely dropped from 14 to 8 ish in that time.

Gp also recommended changing up dose slowly, 75 then 100 then 75 for a couple of weeks. I think that's what people do here sometimes to avoid 'going up' symptoms?

[SlowDragon Administrator in reply to Sneedle]

are you lactose intolerant that you are on Teva

Or have you only ever been on Teva

Stick on Teva while you increase because only change one thing at a time ……even if you consider changing brands in 3-4 months

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets.

Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free.

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets

List of different brands available in U.K.

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

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Discussed here too

healthunlocked.com/thyroidu...

[Sneedle in reply to SlowDragon]

Oh heck I've just opened the bag and it's Almus.I didn't think to ask, went straight from Gp and got it.

Is that Accord?

I have always been on Teva as far as I know.

I'm not lactose intolerant again as far as I know.

I'm going to go with it I've no ooompf to go back to Superdrug.

Avd I'm kind of curious too.

Fingers crossed no issues!

[SlowDragon Administrator in reply to Sneedle]

yes Almus is Accord

You never know it might suit you

Suggest you swap over completely to Almus …..75mcg and 100mcg alternate days for first 3-4 weeks before going up to 100mcg daily

Cut Almus into 3/4 to make 75mcg

Save the spare 1/4’s …..to make another 75mcg

Get a pill dispenser to save 1/4’s into

[Sneedle in reply to SlowDragon]

Oh my so much maths🤯It's a good idea slowdragon you're on fire!

I have a pill cutter, now for the dispenser. 👍

[SlowDragon Administrator in reply to Sneedle]

I find a sharp craft scalpel easier to cut tablets into 1/4’s

eg

amazon.co.uk/Swann-Morton-D...

But lots of members use pill cutter no problem

Mop up any crumbs with damp finger

[Hedgeree]

That's brilliant to hear Sneedle!

Contacting my surgery's practice manager and gp via polite letter worked for me (to some degree) but took a very long time but I got an endocrine referral eventually but they wouldn't budge on further B12 testing despite many family members' having PA.

So I'm often slightly envious when someone has a GP that actually listens to them and takes note of their symptoms. Really glad things are moving in the right direction for you. They sound like a good GP (or one that you could train up!) 😊👏

[Sneedle in reply to Hedgeree]

Thank you Hegderee. I'm sorry you have come up against a road block. Is it a permanent block do you think?

Aww I get it I have at times been so envious of people's Gps who listen. Going to train him as best I can and encourage him to spread the word. He wasn't open to everything ( but that can be worked on via grinding attrition, ask my husband 😁). I'm not sure I remember all of it to be honest, it was a bit surreal. But if I get the chance I will point him in direciton of Sally Pacholock and Tracey Whitty and the B12 organisations.

[Hedgeree in reply to Sneedle]

Possibly a permanent block but I've not given up yet. They have new student GP's regularly so will try again before I look for another surgery.

You're probably still wondering what just happened. Not surprising it felt a little surreal though just shows what you can achieve with a receptive GP and the right information and support 😊

[Noelnoel in reply to Sneedle]

Hi Smeedle

Well done and congratulations! Which PA sites would you recommend please

[TiggerMe]

👏👏👏 Keep calm and put your symptoms, facts and knowledge across... not easy to do when you feel like 💩... we need to educate these poor GP's in the hope they will be more useful to those that follow us...

Well done you 🌟

[Sneedle in reply to TiggerMe]

I was very nervous- of losing my rag and looking like a fool! Wound myself right up. As I was expecting a negative reaction based on earlier interactions with the same Gp.My husband reckons he probably just thought 'oh she's not gonna give up' .

Well I was going to give up...but I was planning to move on to the next victim.

It was hard to concentrate, but it did help having my husband there. He said the gp looked a bit nervous at the start!

But that may have been my husband's own projection😁

Thank you Eeyore100 😊

[TiggerMe in reply to Sneedle]

I think your husband is bob on 😉 as soon as you actually question their pater and they realize you probably know more than they do they either get bolshie or very helpful...

Awful experience isn't it... against the clock, not knowing which way to tackle them... it's much like anything though, once you get the hang of it it's actually quite a fun sport😉

Stand your ground, firm and persistent 💪

I find having the points I want to cover written down helps get things back on track when they try the fob off

It's interesting, some else has mentioned getting a different reaction when they took their husband along... perhaps they feel sorry for them so hand over the goods! 😏🤣

[jade_s in reply to TiggerMe]

Was just about to say this. Having hubby along for my appointments has always made a big difference!

And any advocate can do that role - a friend, a neighbor, anyone who will back you up really.

Kudos!

[Zazbag]

100 mcg isn't even that high. They have us so desperate 😒 It shouldn't be this hard to get the treatment we need to feel normal.

[Sneedle in reply to Zazbag]

I agree. It's a first step for me, I may need more. Ridiculous.

[Zazbag in reply to Sneedle]

It is ridiculous and unfair. Good luck!

[Sneedle in reply to Zazbag]

Thank you 😊

[Regenallotment]

👏👏👏👏👏👏👏

So pleased for you!

THAT is how you advocate for yourself

🎉🎉🎉🎉

💃🤸🏻‍♂️🛝🪂🧘‍♀️

[Sneedle in reply to Regenallotment]

Thank you for your kind words😊 Might be a while before I turn cartwheels and go parachuting though🫣😅

[Regenallotment in reply to Sneedle]

not ruling out dancing, going down a slide and yoga though ⭐️⭐️⭐️ go you 😊

[Bigthensmallthenbig]

agree with helvella. Looks like you’ve converted a GP: keep going👏👏👏