GP to keep me on 25mcg she refused to prescribe 50mcg. Where do I go now?

[ockerdoc]

I just saw my GP and got a telling off for going up to 50mcg. She wants me to stay on 25mcg. Back to being slow and constipated for 8 weeks. I don’t know what to do whether to try Metavive or just wait it out. I’m going away soon and I don’t think I can cope with 25mcg. Maybe I can take metavive for a few months to get me through and then come off it and go back to the GP when my TSH is high again. I’ve been taking 50 since Thursday and feel better no more constipation. She didn’t like this at all and said she could get into trouble. When I told her I felt good at the beginning of taking 25 she said it’s placebo 🙄

[TiggerMe]

What??!! You've got an incompetent one there... are their other GP's at the practice you can use?.... I'd put in a complaint to the practice manager via the direct contact on their website.

You need to ask why they insist on leaving you on a child's dose when you are not one and need to work your way up to a full replacement dose...

I'm pleased to here you have already improved slightly since going up to 50mcg (it's a joy when things start moving again😅) why do they not listen?? 😡

When I told her I felt good at the beginning of taking 25 she said it’s placebo 🙄

I think we all get a short honeymoon period when we first start as our bodies are so pleased to get some help BUT then whatever is left of our own thyroid production drops off and you start to feel a whole lot worse until you keep repeating this process until finding the optimal dose

Welcome to the 'let's educate a GP group' 🤗

nice.org.uk/guidance/ng145/...

[TiggerMe in reply to TiggerMe]

Snip it from the guidelines

[StanleyThyroid]

Time to find a different GP. It's frustrating and hardwork but for me the best system is to learn as much as you can and take the evidence you find here and put it in front of the GP. If you get a private thyroid panel done then its more evidence and shows your are serious.

GP's are much maligned, but they can't know everything and often they are led by what the computer says.

GL

[Sparklingsunshine in reply to StanleyThyroid]

I must respectfully disagree, thyroid disease is extremely common and as the NHS insists that hypothyroidism can and should be treated by GP's in primary care then they should be upto date with the latest research and guidelines.

GP's are far too reliant on what the computer says and have stopped taking symptoms into account. This GP sounds more concerned about her career than patient wellbeing.

[StanleyThyroid in reply to Sparklingsunshine]

10 minute appointments and being asked about anything and everything, several hours a day. Don't get me wrong, I have had multiple poor engagements with GPs but I put it down to the system than the people. Small wonder so many healthcare professionals are retiring early.

[TiggerMe in reply to StanleyThyroid]

Seems this one is offering the worst of options by starting and not increasing to suitable dose 😕

[Sparklingsunshine in reply to StanleyThyroid]

I dont disagree that the system is very much at fault but so is the level of knowledge and expertise amongst GP's. Insisting on dosing by TSH has been shown to be deeply flawed and keeps us from getting better but doctors still insist on doing it.

[arTistapple in reply to StanleyThyroid]

That too.

[arTistapple in reply to Sparklingsunshine]

Unfortunately unless you actually challenge GPs with proof (available with advice on the forum) which they hate with a passion, as long as they abide by the insane guidelines, they are perfectly safe. Really the guidelines are written to protect the practitioner not the patient. Often doctors do not even understand the guidelines but if 80% (we are told) do well on thyroxine alone it’s hardly surprising they rarely get challenged and their foolish notions continue.

[Ellie-Louise in reply to Sparklingsunshine]

There used to be a doctor in our local practice who never took his eyes off the computer screen during an appointment. When I saw him once I started to wonder who was the patient, me or the PC!

[TiggerMe]

🚩They often get bolshy and dictatorial when they don't know what they are doing 😕

When in doubt say NO is fair enough but you need to vote with your feet

[ockerdoc in reply to TiggerMe]

Could I see an endo privately and get the 50mcg script? Then get them to send a letter to the gp?

[TiggerMe in reply to ockerdoc]

You could do... but I'd just kick up a stink as you aren't being treated inline with basic NICE guidance.... you can just buy levothyroxine and self treat but ideally you need to get your GP practice up to speed as you should be getting the correct treatment for free at least at this first level of care.

 tattybogle as ever is excellent and has all the right words... just cut and paste 😉

It seems wrong that you have to get heavy but I'm afraid it is often the case 😕

They are failing you and probably quite a few others

[arTistapple in reply to ockerdoc]

You could but why waste your time and money. Try again to get your GP practice on board now, doing the job they are supposed to and get paid very well to do. There could likely be plenty battles ahead to resort to a private endo, eventually.

[tattybogle]

if it was me i'd contact surgery manager in writing .. ask for a proper/ official/ written explanation of why a 25mcg starting dose was prescribed to an otherwise healthy 51 yr old man , rather than the usual 50mcg dose .

point out the bits of the guidelines that suggest 25mcg for people over 65 , or with heart conditions.

Request a second opinion from another GP.

Ask for some clarification about who the GP thinks she will be in trouble with , and why prescribing the recommended starting dose for a healthy make under 65 would get her into trouble .

[tattybogle in reply to tattybogle]

having said that ,, you do have the potential problem that another GP , (or even a private endo) may not agree that you need thyroid hormones at all , and decide to prescribe nothing.

Your TSH was only just over range , i think and you didn't have any evidence of autoimmune thyroid disease... lot's of GP's (and Endo's) would not be comfortable prescribing anything at all at this point .. realistically this is probably why your GP is being so over cautious with this "25mcg / 3 mths" malarky.

How long are you going away for ...... i'd be tempted to find enough levo to take 50mcg while you are away and deal with the consequences when you get back.

Will you have to ask for an advance prescription to cover you while you are away ?

[ockerdoc in reply to tattybogle]

Yes I probably will have to have a months worth but I might just use metavive in the lead up to the holiday then come off it when I get back I my TSH goes back up then go back to the GP for a blood test and hopefully a 50mcg raise. It’s such a faff though isn’t it.

[tattybogle in reply to ockerdoc]

.. probably better to use more levo rather than metavive ~ if you use anything that may contain some T3 the TSH will go a lot lower than it would using levo , and could take a heck of a long time to come back up once you stop.

[ockerdoc in reply to tattybogle]

I think she’s probably argue that because I was just under the cut off 4.34 (although I’ve had 2 private tests in the subclinical range) that 25mcg is a reasonable dose. I might try an endo privately but they might say the same thing I really don’t know.

[TiggerMe in reply to ockerdoc]

If she has started to treat you she needs to get you up to a full replacement dose, by giving you a little it is just shutting down your thyroid function and leaving you in a worse place than non medicated

She quite obviously doesn't have a clue!!

[ockerdoc in reply to TiggerMe]

I know I don’t even think she knows what is happening. She said just stay on the 25 it takes a while to take effect. Then said how dangerous it was and that I shouldn’t have gone up to 50 on my own.

[TiggerMe in reply to ockerdoc]

She has all the incompetent comments off pat 😳

Did you suffer any ill effects from the rise?

[ockerdoc in reply to TiggerMe]

No ill effects back pain went away constipation improved energy improved well-being improved. Not perfect obviously but a lot better than on 25.

[TiggerMe in reply to ockerdoc]

Shame she stopped listening as presumably it was because of your symptoms that she agreed to starting you on it.... and you are responding well, I'd buy some and stay on 50 with an eye to 75 when you start to feel rubbish again

[TiggerMe in reply to TiggerMe]

Also, she doesn't have to pay any attention to a private Endo if she doesn't want too 😐

[Sparklingsunshine in reply to ockerdoc]

Probably cheaper to source your own Levo than to see a private Endo. Because you are classed as sub clinical hypo many medics might argue you dont need treating until your TSH rises or you get below range FT4 and or FT3.

[ockerdoc in reply to Sparklingsunshine]

Thank you. Do you know where I can source my own Levo?

[Sparklingsunshine in reply to ockerdoc]

I'm afraid not, I've never needed to, however you can ask members to privately message you, PM you, as we aren't allowed to name sources on a public forum. If you start a new message asking for recommendations.

[tattybogle in reply to ockerdoc]

Mmm ...oh , if GP test was within range then she is already pushing the boundaries by treating you at all. so if you push her too hard/ ask for second opinion at same surgery, she may get scared off and decide to remove levo. it is VERY likely a second opinion would be "you shouldn't have prescribed it in the first place"

Note ~ they won't be able to tell if you have been taking 50 or 25 , they'll only know what you tell them

if you do consider self sourcing to top up the 25mcg levo , i'd stick to just getting some more levo rather than adding anything with T3 in.

50 mcg levo is unlikely to put TSH below range , or supress it totally .

but using any T3 / NDT will probably lower TSH very rapidly , and it could take months to come back up again after you stopped .

a very low TSH will freak GP out when they retest.. and they may then remove the 25mcg altogether.

Perhaps .... find a way to get 50mcg .. take it for 8 wks . get blood test . THEN admit to the 50mcg ? if they see evidence that 50mcg did not supress TSH or make your heart explode , then they wil have more confidence to continue increasing dose ?

Dunno really, just thinking out loud and rambling.... sorry .

[TiggerMe in reply to tattybogle]

Hmmm tricky isn't it, but if willing to start him she ought to do it properly rather than exacerbate the situation

To give a little credit to her she must have understood the symptoms if not the protocol for treatment

[tattybogle in reply to TiggerMe]

we really need a bit of proper evidence that shows 25mcg can actually lower fT4 levels to put under GP's noses when they start folk on 25mcg without good reason ... but i don't think we have any ... its a problem .

i can only assume they genuinely think levo is 'topping up' the T4 rather than replacing it .. if that were true then it would be logical to just add 'a little' if TSH is borderline /only just over range.

[ockerdoc in reply to tattybogle]

Thank you tattybogle do you know where I can source 25mcg of Levo?

[tattybogle in reply to ockerdoc]

no ,i'v e always managed to have a big enough stash of NHS levo collected that i've never had to buy any ..... put up a new post titled ' how to buy extra levo without prescription. please send me a private message with any recommended sources '

if you get any recommendations always check these out with admin by Private Message before acting on them . admin are not allowed to tell you names of sources ,, but they do collect feedback on which are reliable/ scammers , and they are allowed to share that if you ask about a source .

[Brightness14]

I am lucky here in France with my GP he just sings to me and agrees with everything I ask for.

At first I thought the singing was weird but I have grown to like it, even if it's out of tune.

[Jaydee1507 Administrator]

Wait a minute. 5 days ago you posted saying you had been on 25mcgs for 2 weeks. I know its a low starting dose and 50mcgs would have been a better place to start but you're here now.

It takes 6-8 weeks for that dose to settle in so that you can have new bloods to see where your levels are at.

There are a number of things that hypothyroidism teaches us. We need to become our own best health advocates with our GPs by learning about our condition and challenging medical professionals opinions.

We need to learn how to get the best out of our (crumbling) GP service by trying different GP's with different attitudes within the same practice. We need to learn to read and understand our blood results.

We need to learn about nutrition and gut function.

We need to learn a lot of patience.

This list is not exhaustive.

50mcgs is not likely to be your final dose unless you are especially tiny and unfortunately this is a condition that cannot be rushed. People that try and go faster usually end up with set backs. Its the tortoise that wins the race.

[SlowDragon Administrator]

I agree with tattybogle suggests completely

Either complain to Practice Manager or self source 50mcg levothyroxine and sort out when you get home

Levothyroxine doesn’t “top up” your own thyroid hormones, it replaces it …..so it’s important to start on high enough dose and increase as fast as required

Which brand of levothyroxine is the 25mcg tablets

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here 

cks.nice.org.uk/topics/hypo...

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.

[ockerdoc in reply to SlowDragon]

Thank you I’m on Wockhardt 25mcg

[SlowDragon Administrator in reply to ockerdoc]

Wockhardt is very well tolerated, but only available in 25mcg tablets.

So you will need to either take 2 x 25mcg per day

Some people remain on Wockhardt, taking their daily dose as a number of tablets 

If you have a few spare tablets you could initially increase to 37.5mcg by cutting a 25mcg tablet in half to take as extra every day

Where are you going on holiday to?

If change brand when get 50mcg prescribed daily

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, 

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. 

So if avoiding Teva when get up to 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

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...

 

List of different brands available in U.K.

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

[Brightness14]

Most Doctors are very good at taking exams but some lack empathy and common sense they are only human after all. So sad that we have to suffer through their indifference or incompetence.