I helped a long term sufferer today

[Jefner]

Got chatting recently to a lady on FB who lives in my town. She happened to mention that she is hypo and been on meds for about 6yrs. Funnily enough she is registered with the same GP Surgery as me. Anyway she was complaining that she was always so tired and achy etc and I asked what dosage she was on and she replied 75mcg (which I thought a little low) and I told her she was most likely undermedicated.

Anyway after chatting it transpires she had been told absolutely NOTHING, even about how to take her meds correctly and when she goes for a blood test. Exactly the same situation I was in until I found this site years ago, and thank God I did, I can only thank you all for what you do, the advice given and the hard work that goes on behind the scenes.

Anyway for the last 6yrs she has been taking her thyroid meds in the morning and then popping off to the hospital for a blood test in the afternoon..........exactly what I used to do before joining here.

She takes her meds with coffee/milk!!!!

Only her TSH is measured and when she phones the GP they just say "normal no action"

It makes my blood boil it really does. Thyroid issues are extremely common and yet the GP's STILL don't even know the most basic of info to pass onto the patient and explains why so many sufferers are still suffering and don't need to be.

I must admit I wasn't surprised when she told me so I then proceeded to inform her how things should be done. I even informed her that every blood test she has had in the last 6yrs will most likely be totally inaccurate.

I told her to go straight back to the GP and request her T4 and more importantly T3 be checked too. I said they may argue the point but for her to inform them that she knows of other patients within the surgery that has all theirs done and to push for it and then come to me or here to read the results. She was pretty gobsmacked when I educated her. Whether she takes my advice I don't know.

So I helped yet someone else on educating them. Shame I can't get things right for myself

[SlowDragon Administrator]

well done

She needs to take her Levo correctly for minimum 6-8 weeks before getting levels tested

[Jefner in reply to SlowDragon]

yup informed her of absolutely EVERYTHING as I have also done with a few other people I come across with thyroid issues, I can't help but ask them all and put them right

[SlowDragon Administrator in reply to Jefner]

Yep …I find similar everywhere I go

My old art class….only 20 people

2 on Levo

Person 1 was taking his Levo with food. Admitted he frequently forgot to take it. High cholesterol. Vitamin D and B vitamins all deficient. Got him organised with weekly pill dispenser and correct testing

Person 2 - Very thin….too thin. Autoimmune. GP had halved her levothyroxine dose. She kept keeling over. Got full Medichecks test. Ft3 below range, all vitamins deficient. Got her original dose Levo reinstated

At WI

At least 5 on Levo all incorrectly treated/tested

One got dose increase in levothyroxine after learning about testing correctly. 6 months later she looked different woman, and had been able to give up walking sticks as her mobility had dramatically improved

Another member gained 8 stone. GP refused to increase her Levo over 100mcg. Gluten and dairy intolerance. Severe vitamin D deficiency. B12 injections too infrequent and on going anaemia. Refused referral to endocrinologist.

Chairwoman - severe Hashimoto’s. Very poorly managed, extremely over weight. She also had daughter with hashimoto’s in even worse state in psychiatric unit

Another member became hypo after neck cancer radiotherapy. Extremely thin. Was left on 50mcg Levo …..until with my help and full private testing….got dose Levo increased and was able to slowly gain weight.

It’s unbelievable the thousands of lives blighted by poor management, inadequate testing and lack of understanding by medics of such an extremely common disease

[Marz in reply to SlowDragon]

According to a close family member my health and wellbeing is a conspiracy theory...funny that ?

[Litatamon in reply to SlowDragon]

We are all so lucky to have your care & input SlowDragon, thank you. 🌺

[FallingInReverse]

Well done! 👏👏👏👏

[Purplesash]

Great, well done. I am sure she will take your advice on board.

I used to do exactly the same take my levo with my morning cup of tea and then eat breakfast shortly after, always had my bloods done at different times, sometimes 8am after taking levo, having breakfast, or later afternoon and never fasted, pretty much whatever time was convenient. Would also phone for my results, told ‘normal’, is it any wonder I felt dreadful and in those days I was also freezing cold no matter what the weather.

Thank goodness for this site and all the wonderful, helpful knowledgable people on here.

[Fruitandnutcase]

Well done. I hope she takes your advice - unfortunately there are still a lot of people around who wouldn’t dream of questioning their doctors - or querying their results.

I knew of two people who took their levo with their breakfast - they had never been told otherwise - both of them clearly thought I was a ‘bit odd’ when I told them the way to take it and I imagine they both carried on doing what they had always done 😱

[Sophiestree]

This is such an interesting post. Is there a saved post on here for people just starting out and what to do and what not to do. I would like to show it to my sister.

[DippyDame in reply to Sophiestree]

Lots of info here

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

[SlowDragon Administrator in reply to Sophiestree]

Timings and when/how to test

healthunlocked.com/thyroidu...

[Sophiestree in reply to SlowDragon]

This is perfect, thank you. I looked on the Thyroid website but I think you need to know where to look. I only found this forum when I signed up to the PMR/GCA one and have learnt so much. I am 65 and had an underactive thyroid since I was 23. Took my tablets every morning with all my other supplements and tea. Duh, who knew! I now take them when I go to bed on an empty stomach with water, but to be fair with the other things going on for me I am not really sure if anything has changed. When you are reducing steroids you can get adrenal insufficiency symptoms and so that muddies everything

[Sophiestree in reply to SlowDragon]

Just a quick question. If I take my levo now at night, would you still take it at night if you were having your bloods done first thing the next morning or wait until after you have had blood taken, in which case do you then still take your normal dose again that night. Sorry if I am being a bit slow.

[SlowDragon Administrator in reply to Sophiestree]

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

[Sophiestree in reply to SlowDragon]

This is brilliant. Thank you so much. Yes I knew about biotin as it skews my blood tests for vasculitis so I don't take it at all. Just have to put up with the hair loss!

[crimple]

Jefner, well done you. I happen to know a couple of men with undertreated hypo, trouble is they won't listen.

Wonder if we could get a campaign going?

Was watching the infected bloods scandal and hearing about the gas lighting and cover ups. Also the maternity scandal, poor care certainly affected me after firstborn.

Too busy caring for a 90 year old at the mo otherwise I would be marching.

[Marz in reply to crimple]

Interesting you mentioned men. Hubby's PSA dropped like a stone once he started T4/Levo at 70 +...I thought as the prostate is a gland and part of the Endocrine System there could be a connection. Once tested his TSH was high and T4/3 VERY low - also high anti-bodies.

On speaking with my Endo that evening he said - 'you know what's wrong - give him one of your pills'... !! That was in Crete - if only it was that easy in the UK.

Am guessing men with an enlarged prostate very rarely have their thyroids checked ....🤔 No dot-to-dot - pills to be prescribed ??

[Alanna012 in reply to Marz]

Thanks for sharing this Marz. I will suggest that someone I know with an enlarged prostate gets their thyroid levels checked. Really interesting info!

[Marz in reply to Alanna012]

Am thinking he will need Private Testing as the NHS will only test the TSH 😪

[Alanna012 in reply to Marz]

Yes, for sure!

[Sparklingsunshine]

Tell her to join the forum lol. Best thing I ever did.

[dottyb09]

I have a friend whose husband has just been diagnosed as 'borderline' hypo. She said the GP has started him on 10mcg of levo! Didn't know you could get a dose that low. He is over 6ft so can't see that such a low dose will do anything for him.

[Sparklingsunshine in reply to dottyb09]

For goodness sake what's the point of 10mcg for a 6ft man? I swear doctors still believe Levo somehow " tops up" your own levels. Honestly these people are dangerous. And to think they are in positions of power and authority.

[Alanna012 in reply to dottyb09]

Yeah I was started on 25mcg many years ago. Did absolutely nothing for me. And I'm nowhere near 6 foot +

[Sparklingsunshine]

I wasnt told about how to take Levo either. I'm a bit anal lol and I do always read the PIL in the box with the meds as I have a history of drug reactions and allergies. I did see about avoiding food for an hour after taking it, dont remember if tea or coffee was mentioned.

I certainly dont remember if HRT, birth control or calcium/ iron supplements were mentioned. I was diagnosed during covid lockdown so of course it was all phone consultations and rather rushed. I dont remember the pharmacy saying anything either. It wasnt until I joined the forum that I read about co factors like Vitamin D, folate etc being so important.

And how Levo is fussy. I'm sure there are millions out there taking Levo at breakfast, with coffee and other meds, blissfully unaware they aren't supposed to and wondering why they still feel like poo. But then if medics dont point it out they aren't going to know, unless they join forums like this.

[Purplesash in reply to Sparklingsunshine]

I think the reason I always took mine incorrectly until I discovered this site is because I was diagnosed around 30 years ago and it was the days of when the pharmacy would weigh out 100 tablets of thyroxine and put them in those little brown pill bottles, no PIL or instructions from pharmacy other than one of these each morning. When it changed over to blister packs with PIL I’d already been taking it years so ever checked or even looked at the information. I suspect there are thousands of others in this situation.

[Sparklingsunshine in reply to Purplesash]

Gosh yes I'd forgotten about " the good ole days" of Levo treatment. I never gave it a thought, that's a good point.

[Fluffysheep]

I'm in various FB groups, visit forums etc. I probably direct someone to this forum at least 3 times a week, if not before.

Today I've directed someone here who has got high cholesterol, and who knows it's because their thyroid levels aren't optimum and have been told no to T3. Hopefully they find their way here and to the ITT group on FB that I also signpost to.

[elwins]

the more people we can educate the better, gave a friend who has just been diagnosed with thyroid problems advice on what to do re testing. Been on thyroxine myself for 70 odd years was diagnosed when I was about 2 years old.

[arTistapple]

This has made me wonder too if I had not found this site, what state I would be in. Similar to everyone mentions, I knew nothing about taking levo, not eating or whatever. I think I do everything correctly now but still think I am not optimally treated.

[Anthea55]

Please can I put in a word for taking thyroid meds with food.

I was advised to do this by Dr Peatfield, author of 'Your Thyroid and how to keep it healthy'. It's also recommended by Dr Myhill who is an advisor to Thyroid UK, see this page from her website

drmyhill.co.uk/wiki/Thyroid...

I have been doing this for several years and I find that it is much easier to fit into everyday life and so it is less likely to be forgotten. The important thing is to be consistent.