Advice for talking to gp with new results please - Thyroid UK

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Advice for talking to gp with new results please

Dandelade profile image

I’ve really struggled to get an appointment with gp to review latest results:

TSH 7.46 (0.3-4.5 )

FT4 14.1 (10-22 )

Apparently I have to try when they reopen in a few days to get a same appointment by ringing early.

I knew I was due an increase in dose, so after the blood draw I’ve started taking 100mg levothyroxine instead of the 50mg I was taking. Feeling better now and can do a lot more during the day but still tired in the evening.

When I eventually do get through to speak to a GP, do I just tell them what I’ve done and advocate for keeping the 100mg dose? As in I was feeling dreadful, had low breathing rate of 8 breaths per minute in the evenings, speech problems, dizziness, brain fog, so I knew I needed higher. Will they ask me to go to 75mg, be annoyed?

Last conversation was “you’re not that bad because FT4 is just under range”. This was when tsh was 14.5, was unable to get to the end of a sentence “that must be something else, it’s not typical presentation of hypothyroid”. So I don’t have much confidence in them. I’m concerned they’ll say I’m in range, even when it’s about a third of the way through range. So is my argument I should be in upper part of the range and tsh of 1?

I’m just nervous that I’ve taken things into my own hands and having to advocate for myself.

Any advice greatfully received.

63 Replies

Dear Dandelade

The matter of your thyroid hormones is one to be discussed with your GP, using his professional expertise if he can find it and the information you give him about your signs and symptoms.

The matter of why you have had to take things into your own hands is one to be discussed with the Practice Manager.

😄😄😄

I dissagree. Unless you have a GP who considers how you FEEL to be as important as your NUMBERS then get a different "professional".

Pardon?

shaws profile image
shawsAdministrator

Yes, just tell GP you've increased your dose by 50mcg as you were very symptomatic (usually increases are by 25mcg each time) and that you are feeling much better. Also state that you know the aim is for the TSH to be around 1 or lower so you need frequent 25mcg increases until TSH is 1 or lower.as you are a member of Healthunlocked Thyroiduk

At your next consultation and - if you've not already done so - ask for B12, Vit D, iron, ferritin to be tested as everything has to reach optimal.

Hi Dandelade

50 µg of levothyroxine is generally considered the starting dose, unless you are over 60 with a heart condition or a child.

They (medical profession) are supposed to get you onto a full replacement dose, one which makes you feel well. Many actually do not understand this and think they are ‘topping you up’. I have a GP who thought this and I became very ill- left on 25 µg of levothyroxine for six months. I am now on 150 µg! I have had to fight for every dose increase because I was “in range”.

Many GPs do not understand how to interpret results and I think getting you in range - job done. They do not understand that within the range you can be hypo one end and well at the other. For some people the range does not even apply which makes things even more difficult.

The understanding of GPs with regard to ranges is somewhat like - the range is a cup, the patient is a ping-pong ball and if they get the ping-pong ball in the cup they win a prize. 😂

That said your FT 4 is very low in range - too low when considered against your overt hypothyroid symptoms and if, as many, the GP is obsessed with TSH - that is over range anyway - has he a clue?

If you turn your results to percentages within range you get a better view of where you are and you can map your symptoms against your results. Everyone is different. How you feel at a point on the range will differ from others. Results are a useful aid, but your symptoms should be front and centre. I can show a hand worked example or there is a website that you can get the calculation done for you, but I don’t have the link but it’s on the forum somewhere perhaps #Shaws or another forum member can help..

I am well now thanks to the advice on this forum. I have been reading around on thyroid issues, read a book and dip into papers and follow others stories to learn - I’m on the journey, still so much to learn, but I can say it has made me realise how little my GP knew……

chorobytarczycy.eu/kalkulat... the link to the percentage through range calculator.

Dandelade , it's in Polish , but just put the result in fT4 or fT3 , put the lower end of range in 'od' .. the higher end in 'do'.. and click on 'Oblicz' .. et voila.

Dandelade ? ... as in 'marmalade made with dandelions' ?

Ignore every medic who tells you something 'isn't a typical for a thyroid symptom'... they would have had to listen to, and think about , (and believe) their other thyroid patients in order to know what 'typical' symptoms the rest of us have.. but they don't . they are thoroughly trained to believe it's just 'being a bit cold and slow, and putting on a bit of weight , and anything else is something else' ... so they confidently close their ears and minds and tell everyone the same thing .. it's 'something else'.

If you get any guff from the Doc about autonomously going up to 100mcg , stick to your guns and say you 'd like to 'trial' it for a couple of months to see how it affects your symptoms, and then retest. I would say however, that after 100mcg , it would be wise to go up /down in much smaller increments. (12.5mcg or 25mcg at most depending on blood results )

I did as you have when first on Levo , and 'put myself up' after blood tests, and then went for the next blood test and informed the phlebotomist that "i had been taking ' x' since the last blood, test because i had started to feel slow" (it was easier then, because you got 3 month prescriptions, so i had access to plenty of tablets).. then i'd book an appointment with GP to discuss results .. in my case they were always still in range .. so if i said i'd felt better on higher dose , GP had no cause to say don't do it , and agreed to write new prescription for higher amount . But i then went from 100 straight to 150mcg .. which was a bit rash.. i'll never know if i'd have been better on 125 or 137.5mcg... as it was i stayed on 150mcg for a decade.

I now have more respect for much finer adjustments and only change my dose by 12.5mcg/day at most.

Dandelade profile image
Dandelade in reply to tattybogle

Thank you, yes will definitely tread more carefully for the next adjustment.

BrynGlas profile image
BrynGlas in reply to Dandelade

Yes, I agree that you maybe could have increased your dose maybe by a little less in one go, but Levothyroxine is a storage hormone only. Your body has to convert the Levo (T4) to T3 before your body can use it.

I would think that your own body will only convert enough Levo to T3 - the only active thyroid hormone - for it's own use?

It doesn't convert every little bit of Levo that is in your blood stream into T3 just because it can does it? It will convert what it needs surely?

But I am no expert, I had to learn to treat myself, from 2019 after I got so totally brassed off with feeling ill. TUK and this Forum saved me, my GP hadn't a clue.

See how you feel, keep a diary just to show the GP that you are taking things very seriously. Also you need to keep an eye out for your own records as well, it is important. If you know you are ok and can prove it, so much the better and vice versa.

jgelliss profile image
jgelliss in reply to tattybogle

Great suggestions. 👍

jgelliss profile image
jgelliss in reply to tattybogle

Always Slow and Steady Wins The Race. Great Advice tattybogle.

Thank you Charlie-Farley. They refused to start me on full dose grrr. Calculator is very useful and words of reassurance! I’ve still got lots to learn but am willing to...

You will prevail! With the support of this forum 😊👍

SeasideSusie profile image
SeasideSusieAdministrator

Dandelade

I think it's fairly obvious that you have a GP who is rather ignorant of how to treat hypothyroidism and doesn't really know how to interpret blood test results.

So is my argument I should be in upper part of the range and tsh of 1?

We patients here know that is where most hypo patients feel well, but you need evidence from a reliable source that is acceptable to your GP. The following may be helpful which is from "GP Online" which your GP should have access to and should be acceptable:

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw

You can obtain a copy of this article from ThyroidUK:

tukadmin@thyroiduk.org

print it and highlight Question 6 to show your GP. Although Dr Toft is now retired as a leading NHS endocrinologist one would hope what he said is acceptable.

If your GP is not happy that you have taken it upon yourself to increase your dose, you can only emphasise how symptomatic you were, how it was affecting your life, and that because you knew of the above information then your aim was to get your TSH into range and your FT4 higher. Suggest that you now have a new test to see how your levels have changed and remember to do your test how we always advise:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Thank you SeasideSusie, I will definitely use the print out article. It’s exactly what I was after and really appreciate the support.

SeasideSusie profile image
SeasideSusieAdministrator

The calculator that Charlie-Farley has mentioned is here:

chorobytarczycy.eu/kalkulator

Your FT4 is 34.17% through it's range which is very low.

SlowDragon profile image
SlowDragonAdministrator

How long were you left on just 50mcg levothyroxine

That’s only the standard starter dose

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

The aim of levothyroxine is to increase the dose upwards until TSH is ALWAYS under 2

Most people when adequately treated will have TSH around or under one. Most important results are always Ft3 followed by Ft4, plus optimal vitamin levels

Suggest you request bloods retest after 6-8 weeks on 100mcg

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo per day

guidelines on dose levothyroxine by weight

Approx how much do you weigh in kilo

Even if we frequently don’t start on full replacement dose, 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...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

Thank you SlowDragon, I stupidly thought just talking to the GP would work when they started me at 50mg, so will print out stuff for next time. It’s been about 9 weeks now, was very very ready for increase. Stupid appointment system so just went for it knowing it should be higher - getting close to predicted dose so will be more careful now.I’m 81kg so think full dose should be around 125mg using your calculation.

Thank you again for the links and reassurance.

shaws profile image
shawsAdministrator in reply to Dandelade

Maybe leave a note in the surgery for your GP stating that you believe you need an increase in dose as you are having more symptoms.

I doubt many GPs know how best to treat their hypo patients.

Also state that you have to have gradual increases every few months so that your TSH is 1 or lower and that your Free T4 and Free T3 should be in the upper part of the ranges.

Also request that B12, Vit D, iron, ferritin and folate be tested.

Last conversation was “you’re not that bad because FT4 is just under range”.

That is a rediculous statement!!

His first question should be "How do you feel?" because unless he listens carefully to your answer he doesn't have the information to draw that conclusion!

You know your body better than anyone else!!

The others have already offered advice so I will just add a link referring to Patient Autonomy which a GP conceded to me -

bma.org.uk/advice-and-suppo...

"Autonomy is the right of competent adults to make informed decisions about their own medical care. It is a cornerstone of medical ethics in the UK. Doctors must ask a patient's consent before any investigation or treatment takes place."

Medics are not in post to dictate to patient's....they investigate and advise.

I have been self medicating with T3-only for some time now, with great success, and my GP has accepted this. I do however, out of courtesy, keep them informed as to what I'm doing! Unfortunately I'm aware that not all medics are so open minded and accepting.

I'd also suggest that you write down all you wish to say/ ask before you visit the surgery and take the list with you. That stopped me quacking like a demented duck when I felt unwell and allowed me to get my point across

Don't be afraid to stand your ground (politely) because from his comments your GP sounds less well informed than you! There is no "law" that states a patient's labs must sit at a certain point within the ref range....how you feel will determine where you as an individual need your labs to be. Labs are a guide to dosing, not a rule set in stone.

They seem far more concerned nowadays with ticking check lists rather than using their brains to apply clinical evaluation with an open mind.

State your case and don't be fobbed off by weak evaluation from a poorly informed practitioner.

Good luck and please keep us posted....we're all in this thyroid mess together!

Dandelade profile image
Dandelade in reply to DippyDame

Thank you DippyDame. It’s such an adjustment to make in mentality and helps knowing others are doing the same in similar positions.

DippyDame profile image
DippyDame in reply to Dandelade

It's like a lot of other things the first step can be the most challenging....nothing to lose but ill health!Many of us have been there and lived to tell the tale!!

We're all behind you.

BrynGlas profile image
BrynGlas in reply to DippyDame

I love that link DippyDame! I might send it to my old GP, he could have done with reading it, believe you me.

DippyDame profile image
DippyDame in reply to BrynGlas

I think it takes a confident medic to admit they don't know something and are prepared to learn, the rest just pretend they know it all....and we're not fooled by that!!

BrynGlas profile image
BrynGlas in reply to DippyDame

Mine was totally intimidated by the fact that I knew more than him. I am sure he preferred women - especially elderly ones - to walk 10 paces behind him.

What GP would think that T3 was an illegal drug? Or would admit that he thought that to an elderly woman who has been hypo since 1999!!???

They put their feet straight into their mouths as soon as they try getting stroppy.

DippyDame profile image
DippyDame in reply to BrynGlas

Apropos...

Hmmmm!
BrynGlas profile image
BrynGlas in reply to DippyDame

I will remember that myself! Moved to England from Wales, I am on T3 only and they are insisting on giving me a blood test along with my MOT for new patients!

So I need my wits about me- if in doubt I will demand a referral to an Endo of my choice! Preferably one who is willing to prescribe NDT!

Re appointments

I’ll be honest - I have taken full advantage of telecon appointments. It allows me to prepare and get all my notes in order and be able to fire back at the poor old GP who has drawn the short straw to speak to me😂😂😂

In fairness I’ve only had to ‘tell off’ one youngish GP who was rude and told me I didn’t know what I was talking about. She knew a little about TSH and FT4 but was lost on FT3, antibodies, vitamin levels, issues surrounding conversion T4 to T3 etc. She thought she could leave me on 75 µg of levothyroxine because I was ‘in range’ (ping pong analogy). She understood how little she actually knew after 20 minutes. 🤔

Since then, I have had no resistance. With the others, I’ve fired in a printed report beforehand explaining private results versus symptoms, explaining the principles of percentages within range and referenced with appropriate scientific papers.

GPs can’t be expected to be experts in everything, but sometimes they need pulling up on how little they may know on a given subject. The sparse framework that guides diagnosis and treatment is not in itself enough. That is why they should take more notice of our symptoms…..

Wow - that is a level of assertiveness I aspire to! 😂 good point about telecon though, I’ll endeavour to have my notes ready!

Hi

I've got the opposite problem to you, after months of being undermedicated and feeling crap I got some private bloods done last week and my GP is going to flip their lid when I next get NHS ones done.

I've gone from a TSH of 6.2 in October to 0.03, so technically suppressed, although both FT4 and FT3 are both 50% or under so still room for improvement there. But GP's focus almost exclusively on TSH, so I'm prepared for them to try and reduce my dose.

But like you I've got to argue my case. I feel well, I'm not showing any signs of overmedication, I've had a lot of issues building up a tolerance to Levo, I've had severe itching which seems to be subsiding at last. So I'm not wanting to mess about with dosages just to keep a GP happy.

I'm hoping with GP's being busy with covid and vaccines that they'll forget about me for a few months. I'm happy to pay for private blood tests to keep an eye on my levels and as the others have said, how we feel day to day is more important than numbers on a screen. Hopefully both of us, armed with the knowledge we've picked up here, can advocate for ourselves and our health.

Gah! Honestly it’s an absolute mystery to me sometimes. Sounds as if you’re on top of what you want out of the conversation though. I hope it all goes well, good luck and let us know how it goes!

Hi Sparklingsunshine Do what is right for you- one thing I have gleaned from reading on this forum is if the GPs muck about with medication, people frequently do not get back to that sweet spot, or if they are lucky only after suffering some time. They do it only to satisfy an obsession to keep TSH in range when in the hierarchy of results it is in fact the least important. It has ‘knack all’ to do with you being well.

It is not unreasonable to presume if they muck about with a bodies balance of complex hormonal feedback loops, those feedback loops may be permanently degraded. Has anybody even researched this and would they dare for the can of worms that would be unleashed?

You know you 😊👍

I wouldn’t look very assertive shuffling my notes in a consultation room! Guffaw! God bless the telecon! 🤣

My GP told me last year that T3 was an illegal drug and told me to never say ' T3 ' to him again! This is the one who told me that an increasing TSH level was caused by being on too high a dose of Levo!

FFsA! Words really do fail me - have you changed docs? I’d have run for the hills- he literally has it all wrong - so wrong one wonders if he has studied at all 😱

I’d be reporting him to the GMC - that takes general ignorance to a whole new level.

I changed countries! From North Wales to England. I have to say that my old GP was a pain in the rear. He didn't understand anything about HypoThyroid, nothing. When he first came to the surgery (he bought out the previous GP) he was forever decreasing my Levo. I had been on 200mcg of Levo.

He kept telling me I was over medicated. Only after I had been on here for months, trying to learn everything I could, did I learn why he thought I was over medicated.

It was because my TSH was high. He thought I was having too much Levo because my TSH was high. I soon told him where to put his results and with his idea of illegal drugs being T3 thyroid hormone, well, I told him he should report me to the constabulary then.

I have yet to go through the whole 'new patient' mot here in England, but they are insisting I have a blood test. I have told them that I am on T3, but I am looking forward to what they are going to get back as a result! LoL Even I don't know yet, I have never had a test myself since taking T3 alone.

Well from what I’ve read on this forum one can expect to have a suppressed TSH when on T3 and totally normal. You just need to not take any nonsense off them and give them information to go away and read treat them like schoolchildren if they have no knowledge. My GP started me off on a starter dose for a child or a person over 60 with a heart condition, 25 µg of levothyroxine and then left me on it for six months because I was ‘in range’! Made me very ill. I’ve been reading round on the thyroid ever since and reading peoples experiences and learning from all of it and I can categorically tell you I know more about Hypothyroidism than my GP. General Practitioner - not experts in everything- clues in the name shame they don’t realise that…… Guffaw, I am hoping to move to North Wales eventually - where is your old GP? I might end licking horns with him too 🤣

Yes, I am up to telling any GP that I am not as green as I am cabbage looking as my Nana always used to say! I have been hypo since 1999, so I am not going to take any rubbish. I told the new GP already that I buy my own T3 and will pay for my own blood tests. I am not going to back down. BUT if they do start any daft ideas I will insist on seeing an Endo of my own choice and I will not be changing anything untill I am certain it will improve my health and Levothyroxine will never do that for me. T3 has made a vast improvement in my health, I am not going backwards, never in a billion years.

Technically I still have my home in North Wales, still waiting for buyer's solicitors to get their fingers from up their noses! Poor girl has had 3 new solicitors since I accepted her offer for my house, she has really struggled. I accepted the offer in June and here I am about to enter Jan. 2022! What a performance! It is a cash sale as well.

My place is in LL54 area, near to Caernarfon, 1,000 feet up on a mountain, 1/4 of a mile from a road or a neighbour. Bliss - when it wasn't howling a gale.

Love Wales - currently in Morecambe - have loved this place too, but need somewhere peaceful. Eden Project North is in the offing and planning being passed baring some weird judgement. This will transform the area giving opportunities to the younger folk, which I’m so glad about- long overdue- but coming just a little late for hubby and I.

Any tips on places to go for or avoid?

I have lived there for 25 years I think it is, but I have not heard of Eden Project North, they kept that quiet from the natives. I will look online for it now.

North Wales is very much neglected everything is Cardiff based and the North is always struggling to be noticed.

The Eden will be next to the Midland Hotel on Morecambe Bay. Now we need to leave this place to those who are young and energetic enough to take advantage of the opportunities it will bring. Hubby and I currently run a guesthouse and it’s been a hard slog (was caring for parents for ten years as well as running business) 😔

Youve had great advice from others I just want to add that I have very little sympathy for GPS re not having a decent knowledge of managing common occurring conditions such as hypothyroidism as they crop up frequently in their appointment lists. Its absolutely true that the vast majority are clueless. The truth is you have to guide them. This means you need to present an authoritive, knowledgeable front. Believe me you will know far more than them. If you get a stroppy one just ask them some simple questions on hypothyroidism (which you know the answer to) and you will find they fall flat on their faces. I have zero faith in GPs......and these days ALWAYS do my own research, read around my subject and present my case. Dont doubt yourself. What you did was spot on and yes from now on in you will keep to standard increases or tweaks as needed. The GP should thank you for doing their job for them! I no longer seek approval from GPs- they may feel uncomfortable but ultimately they respect you. Some actually prefer it as you are giving them a solution or way forward so they don't have to apply their brains! At my surgery they've recently had an influx of newbies as the oldies retire & I find myself back into presenting my case all over again, this from a GP who doesn't know basic pharmacology and didnt know the different between a blood pressure tablet and an anti coagulant and despite advice from a cardiologist was about to stop two of three medications because she thought I was on three same meds.....until I carefully explained what they all do. Truly scary. They know nothing.....that is your best starting point so explain it to them in simple terms. Most will back down once they realise that you know far more than them.....believe me its not hard to know more.......and avoid the arrogant types who won't listen in any case. I'm sure there is a note on my file about my knowledge on hypothyroidism- theyre called "expert patients" & something GPs are meant to encourage. Always be calm & polite, respectful and there is little they can do..... Refer them to the necessary infomation for them to read but avoid giving them piles of literature they won't read it. They'd rather you explain it. Ive had hypothyroidism for over 15yrs & have yet to meet one that has a clue on how to treat it properly.

Dandelade profile image
Dandelade in reply to waveylines

Hi waveylines, thank you. Reading about everybody’s journey and the way they have advocated for themselves is giving me the confidence to try it myself!

waveylines profile image
waveylines in reply to Dandelade

You'll be fine. It is scary at first but once you realise you know more than them not so much! Ive been told some interesting things over the years in response to my polite calm challenges......one was I was informed that I am diabectic.....allegedly failed the blood dugar test but when I got a copy of the results and checked with diabetes uk it was perfectly fine. I think it was a case of a bruised male ego so he wanted to scare me. He did but not for long......avoid him now!! Am sure there is no record of what he told me!! My thinking is if it gets me well & keeps me well I dont care. I dont visit a GP to be their friend!! So if they feel they have to be careful with me then good! 😜😊

Dandelade profile image
Dandelade in reply to waveylines

Ha wonderful attitude! I have no idea why I feel so timid - in my day job I am present to hundreds of adults no problem 🤦‍♀️

waveylines profile image
waveylines in reply to Dandelade

Its probably because we are brought up to be deferential to doctors & to regard them as gods! We are taught to listen to doc and do as we are told. This is all very well but if they haven't a clue doesnt lead us to getting well! So being able to ask questions & politely challenge them feels out of order & scary.....when I was faced with this I did listen at first but after months of being poorly, getting worse not better I finally realised I would have to take charge. Now I've a very different view I see that many know extremely little....& really are no more than paper pushers these days...this was brought home to me 15yrs ago when one GP couldn't even diagnose a classic broken leg but simply told me it was a anomalie - a pet word of GPs.....speak for I havent got a clue whats wrong! Did that GP ever apologise when I finally got an x ray which showed a clear break which was caused by the same GP failing to treat extremely low vit D caused by intolerance of direct sunshine that the GP said not going in the sun wouldn't have any consequences? Of course not! So in my mind am fighting for my good health - not being palmed off & having to live with the consequences of incompetent GPs. Sorry if that sounds negative but it is what it is! Too many incidents since that one have occurred to make me change my mind. Lol.....

Hi Waveylines Do you think some docs suffer with a touch of the munchausen’s by proxy? That Doc of yours sounds like a candidate 🤔😱😂

🤣😂 no more likely Meglomania-I'm a God & no mere patient should EVER challenge ME! He actually did my flu jab last year (queue system due to covid so he was a surprise!) was as sweet as sweet can be & asked after me with great concern for me - probably has memory issues too! 😂😅

Guffaw 🤣

They probably think we are just baiting them for fun but in reality if they weren’t so ignorant and trying to trade on their ignorance we wouldn’t be so ‘awkward’ would we? 😂👍

Dandelade,I have had Hashimoto's Thyroiditis for 25 years. Most of my treatment has been in the US. Two years ago, I moved to the UK. The NHS treatment of thyroid disease is shockingly horrible. I agree with the other comments here. Your GP is clueless. I would ask her to refer you to an endocrinologist. What you describe sounds like a flare. I have found I go through cycles of flare reactions when your body attacks your thyroid. My symptoms include signs of inflammation including swollen feet and an increase in inflammation markers in blood tests. I also have extreme fatigue, achiness, weakness, my blood pressure gets really high, I get breathless, and in my last flare, my triglycerides increased. Basically I feel truly awful!

In addition to increasing your levothyroxine, there are things you can do to help your body absorb the medication. Take your meds then wait an hour before eating. Avoid soy. Moderate use of cruciferous veg. A nutrionist in the US prescribed me selenium, zinc and tumeric to help with absorption and inflammation. Holland and Barrett should have these. Thyroid patients also can have comorbitities including B and folate deficiencies and vitamin D deficiencies. Ask you GP to test for these. These deficiencies can make fatigue and achiness worse. I also take a hot bath with Epsom salt. The magnesium in the salts will help with achiness.

I hope this helps! Be well!

Dandelade profile image
Dandelade in reply to rosadelisk

Definitely helpful thank you. You’re probably right with it being a hashi’s flare. I take vit D and folic acid prescribed but will look into the others. Anything that could help I’ll try!

SeasideSusie profile image
SeasideSusieAdministrator in reply to Dandelade

but will look into the others. Anything that could help I’ll try!

Best to test first to see if you need them. Zinc and copper ideally should be balanced, we Hypos tend to have one high and one low so before supplementing find out if you need anything. Selenium is often recommended when Hashi's is present and is said to help conversiono f T4 to T3, but without testing 100mcg is said to be a safe limit, certainly not over 200mcg without testing.

Oh, and avoid Holland and Barrett own brand, they are cheap and have "penny sales" for a reason. Ask for recommendations of decent brands on here, most are best sourced on the internet.

Thank you - I see a vitamin blood panel in my future!

I presume they didnt test your FT3? I doubt they will as they dont understand it or think its needed (due to cost and Lab's refusal to test ). Having all 3 tests gives a full picture of how the thyroid is working, and FT3 is the active hormone, FT4 being inactive, so important to test this too and see where it is in range. You could get a home finger prick test from MonitorMyHealth for £29 with discount offered from Thyroid UK, which includes TSH, FT4 and FT3 for £29. It is a fully accredited NHS Lab so doc should take note of these. There are others such as Mediche ks who do the vitamin ones mentioned above, but some docs refuse to accept these.

Good luck!

JaneCxxx😣😎❤

Lols for testing ft3! Thanks for the tip Jane, will definitely test privately next time with full range so I know what to expect before the visit.

I don't know if this is possible for you, but find a Dr. who cares about how you FEEL not just your numbers. Not always easy. Any nitwit can look at blood work and tell you to increase or decrease your dose. You can train a monkey to do it. What you need is to balance that with the way you FEEL the way you THINK the ENERGY you have. Your weight determines your dose (you can look it up on line). That is what most doctors use and stick with. I use the Doctors recommendation as a starting point. Then I adjust my dose (and timing of the dose) of both T4 and T3 to get my brain and body working well (most of the time). Don't let a doctor TELL YOU what dose you NEED to take and not give a rats ass about how you feel. Tg and Anti Tg are the cancer markers, you don't poo poo those numbers. Everything else is (within reason) how you feel. Best of luck. It can take a long time to get to the "sweet spot".

Dandelade profile image
Dandelade in reply to playtime2

Thanks Playtime. Every response is steeling me not to stand my ground and be less, I don’t know, almost gaslighted. You’re right I do know my body and know when it’s not right.

HiI think we know our own bodies and should listen to it more then our gp's.

I have been told by nhs gp's and consultants for the past seven years that my blood test results are normal and in range. I got nowhere with regards to T3 i kept telling them im a poor convertor quoting what i have learned from being on here but closed down every time.

For me to get the truth i have just been to see a private consultant and he took one look at my results and said he would give me a prescription for T3 as it was very low.

So i think you should do what makes you feel better. Why would your gp want you to be on 75mg when you feel so much better on 100mg?

Dandelade profile image
Dandelade in reply to Odinil

Thank you Odinil, and everyone really for such supportive replies. I will listen to you all and my own body!

Odinil profile image
Odinil in reply to Dandelade

Its so frustrating isnt it. If it wasnt for this site i dont know where i would be.

If we can educate ourselves why cant gp's. Good luck

Dandelade profile image
Dandelade in reply to Odinil

I know, I can’t put into words how grateful I am for this site. Good luck to you on your journey too!

the usual increase should never be more than 12.5 to 25 mg at a time. it is not good for your body to try and deal with a large sudden increase

Stress that you feel better on 100mcg and because you were left in limbo, unable to function, you made the decision to increase your dose, over the busiest time of the year and while Surgeries are closed.

I presume he would want to check temp, pulse, etc. Before you see him, set up your own basal test before moving a muscle when you wake up in the morning, for temperature and pulse. Get ready to prove that you feel so much better.

Don't forget to shake down your thermometer before you go to sleep at night and have everything at your fingertips without having to get out of bed.

If he resists, refuse to allow him to reduce you again and ask to be referred to an Endocrinologist because you want a second opinion.

It is shocking that they don't know how to treat Hypo patients, but unfortunately it is very true!

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