endo appt disaster : So I’m a mess right now and... - Thyroid UK

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endo appt disaster

efm2022 profile image
20 Replies

So I’m a mess right now and totally confused. I finally got back to my endo to discuss my list of symptoms and to ask to trial T3 because of my poor conversion. His response was to draw me a picture of how my thyroid worked, which I found rather condescending and insulting. He explained I did not need to be gluten free or dairy free, and that I def did not need t3. How could he know that? As you said he would, he told me I have turned hyper so he has to reduce my medication. He also told me that my symptoms were my new norm and basically get used to it. He will not let me do the t3 trial as he says t3 meds are blacklisted and there is no proof they help. I told him I did not want to reduce my medication and he rolled his eyes at me and told me he was letting my doctor know that my new level will be 75 / 100 rotated daily. He said he was signing me off and I did not need to return again.

He also told me not to read what’s on the internet or forums and that most people live normal lives on levothyroxine, it’s a tiny minority who don’t. I left the hospital and cried.

My doctor is no better, in fact probably worse as she just told me my weight gain was purely down to my diet and gave me a diet club number. I’m sure she thinks I’m a hypochondriac. She asked no questions about my diet or exercise regime to come to this conclusion.

I feel like I’m back to square one. I cannot afford private care. My life is miserable right now and I’m a single mum of two who needs to be well.

From now on I will work on building up my confidence to start doing this on my own. This forum has been great so thank you for the support you’ve given me. I hope you all have better experiences of the NHS than me.

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efm2022
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20 Replies
SlowDragon profile image
SlowDragonAdministrator

most recent test results from Dec on 100mcg levothyroxine every day

was this test done early morning and last dose levothyroxine 24 hours before test

FT4: 17.2 pmol/l (Range 11 - 23)

Ft4 only 51.67% through range

FT3: 4.2 pmol/l (Range 3.9 - 6.8)

Ft3 only 10.34% through range

What vitamin supplements are you currently taking

Approximately how much do you weigh in kilo

Suggest you refuse to reduce dose levothyroxine

Ft4 is already too low and Ft3 obviously very low

Can you get levels retested as this result is now 3 months old

cheapest option for just TSH, FT4 and FT3

£32 (via NHS private service ) and 10% off if go on thyroid uk for code

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

monitormyhealth.org.uk/

efm2022 profile image
efm2022 in reply toSlowDragon

Tha j you for replying so quickly.

Yes, I take mine first thing in the morning so I didn’t take it till after my blood test.

My vits are:-

VIT d and k2 - 8000iu d3, 200ug k2

NuU VIT b complex

B12 oral spray 1200ug

Calcium, magnesium, zinc (1 pill)

Just added NutriZing 16 strain multibiotics

I weigh about 78kilos now (about 12more than I’ve ever been before)

I can ask to be retested but my doctor was rude last time and said I wasn’t allowed tests whenever I felt like it. I could always say I consider a reduction after I’ve had the blood test done again.

Last time you kindly gave me a private doctor’s details for private t3. Can I just do this myself? I’m still quite scared about going this alone.

SlowDragon profile image
SlowDragonAdministrator in reply toefm2022

Which brand on levothyroxine do you take

Get retested via Monitor My Health (NHS private testing)

Come back with new post once you have results

Then consider next steps

Roughly where in U.K. are you

efm2022 profile image
efm2022 in reply toSlowDragon

I have asked for the same brand but it still changes regularly.

I will organise the tests and come back to you. Thank you so much

SlowDragon profile image
SlowDragonAdministrator in reply toefm2022

Which brands levothyroxine mainly

If you notice you’re better on one brand than others request GP specify brand on 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).

Remember to stop vitamin B complex 5-7 days before blood test as contains biotin

efm2022 profile image
efm2022 in reply toSlowDragon

I have just ordered the test so I’ll hopefully have that done very soon.

The two brands I seem to get are Teva and Accord. I think I’m better on Accord but can’t be sure with the numerous symptoms I have.

SlowDragon profile image
SlowDragonAdministrator in reply toefm2022

Teva upsets many many people

Many members have note added to all prescriptions saying “no Teva”

Many people find Levothyroxine brands are not interchangeable.

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,

Accord  doesn’t make 25mcg tablets

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

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 for 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...

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.

efm2022 profile image
efm2022 in reply toSlowDragon

gosh there’s so much information to know. What would we do without you!

shaws profile image
shawsAdministrator

It's no wonder that a majority of members have had to take their own health into their own hands and avoid the 'experts' as few seem to know exactly how best to improve their patient's health.

I, for one, had severe palpitations when on levothyroxine and had over-night recordings to try to fathom out what was happening and I think the Cardiologist was puzzled. but when T3 was added to T4 I felt an improvement but it was when I stopped T4 and took T3 alone that all symptoms resolved.

The following link might be helpful and it is from a popular site in USA.

stopthethyroidmadness.com/h...

efm2022 profile image
efm2022 in reply toshaws

That’s great news that you have worked out the right treatment for you. I lack confidence and the knowledge to do this on my own so any help is most appreciated. I will def read the attached. Thank you x

shaws profile image
shawsAdministrator in reply toefm2022

I hope you get to your 'optimum' dose' soon. It's amazing the difference it makes when our body gets the amount of thyroid hormone replacements that makes us feel we're on the right dose.

I have met a couple of people who were prescribed T4 and they had no problems at all and felt well and also looking good. Whereas on T4 for me was an awful experience.

When we're newly diagnosed as being hypo - the majority of us haven't a clue what it means - except we feel awful (mine was consistent palpitations)

shaws profile image
shawsAdministrator in reply toshaws

I was also very fortunate to consult with the 'last two' doctors (Dr Gordon Skinner and Dr Barry Peatfield., who (when students) were trained about clinicsl symptoms and how best to 'relieve clinical symptoms but I doubt that many GPs nowadays know any clinical symptoms.

I am now prescribed T3 and am symptom-free. I hope you will soon be free of clinical symptoms.

pennyannie profile image
pennyannie in reply toefm2022

I'm so sorry your endo appointment was a disaster - it is not your fault - mine was too and I think it power for the course and eventually realising that you must try and be your own best advocate and if all else fails - DI for Yourself.:

Your confidence will grow as you read around on this forum and if suffering with that awful brain fog you'll likely feel nothing is registering, but it does, and you will become your own best advocate.

I don't have Hashimoto's but many forum members also follow the research of Dr Izabella Wentz - thyroidpharmacist.com

Unfortunately it is a post code lottery if you get help or not and it is not based on medical need but on financial constraints and the mis - understanding of the current NICE guidelines by the local CCG/ICB committee's who hold the purse strings.

I think my anger drove me to keep fighting the system in place back in 2018 but when I realised I knew more than the endo and my doctor put together I knew I couldn't let them keep me this ill and I started self medicating and am much improved.

I found Your Thyroid and How To Keep It Healthy a good all round easy, sometimes funny, insightful read that gave me the basics and it is written by a doctor Barry Durrant-Peatfield who has hypothyroidism and who resigned from the profession because of the constraints he found he was forced to work within.

efm2022 profile image
efm2022

you’re so right. Thank you for your support. Hopefully I’ll get there soon and feel more normal. I will look into that book too

RhianR profile image
RhianR

So sorry 😞 Have been on the receiving end of such BS for 12 yrs myself. They're utter barstewards. Keep fighting 💪

shaws profile image
shawsAdministrator

A majority iof members now understand and are abke - with the hekp of others - how best to take replacement thyroid hormones and recover their health.

Our bodies are different and what suits one body may not work for another.

Sometimes it takes a little while for our bodies to 'settle' on a particular dose..

HandS profile image
HandS

hi efm2022: sorry to read about your endo experience and I understand how you feel, having been through much the same.

I also understand your apprehension about prescribing for yourself, and the pressures of needing to be well for your family - as well as the constraints on going private.

‘Don’t read the internet’ seems to be a mantra amongst consultants and GPs! I’ve heard it a few times.

If you feel you could manage it, what I would do in your shoes, is request a second opinion on the basis that current treatment/prescribing is ineffective and detail the symptoms you cope with, how they effect your quality of life and overall health. I agree you should refuse a reduction, and could leverage the need for a second opinion on that basis .

Present them with your symptoms - do not be fobbed off with the ‘most people’ argument - you are you - no one else . Stick to your guns that you know your own symptoms - you are not depressed, insane, or a number on a piece of paper - and you need to be treated as an individual - as politely or persuasively as you can.

Treatment, even within the NHS, is a two way contract, is negotiable and remember that you are not under obligation to agree with a medical opinion.

Wishing you all the best

efm2022 profile image
efm2022 in reply toHandS

Thank you so much for your reply. It helps a lot to have all this support and good advice. I def agree on the second opinion too. I will wait for my blood results and then come back to this wonderful forum to plan the next step.

SarahJane1471 profile image
SarahJane1471

I’m sorry you feel so ill . It’s going to be a scary time for you if you think you are not supported by your GP and Endo. But you are supported here!! There is so much knowledge on this site.

As for medics saying don’t read the internet🙈I found this site because I read the NHS website that gives a link to ThyroidUK which sends a link to this site!! Thank goodness I found it 3 years ago I would never have learnt about the thyroid and all the issues. But after reading every day with my coffee. I feel I have the knowledge and courage to face any medic and stand my ground. You will need to advocate for yourself. And you will have all the support here

Batty1 profile image
Batty1

Im sorry you had to deal with this type of doctor but the worse thing you can do is go into your doctor’s office and talk about thyroid meds and weight gain … They think your a drug addict looking for a diet pill (thyroid meds). I honestly don’t know what the solution is for weight gain and thyroid problems …. It sucks bad and doctors don’t care and they don’t want you reading because you may start questioning their knowledge… keep reading.

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