IMPORTANT Does Anybody feel well on their Thyoid Meds/vitamins/supplements/variation of diets??

[Thyb]

Has anyone got their meds optimal and feel well??

[Mostew]

I do ..

it’s taken many years . I suspect I had under active thyroid and Hashimoto from about 20 . I’m now 64 .

Used to climb into back of car for a nap after shopping before driving home . Sit down in wood on a walk and nap etc .

For about 10 years I’ve had more energy , no naps no brain fog etc

A very good homeopath who was qualified Gp and functional practitioner delved deep into

My past choosing extraordinary remedies . Like one called Plac enta

. Other good folk to have inspired me

I have never had to increase low dose levo.

It’s not been easy and not cheap but well worth it both on physical and emotional level

I hope you find support b on your journey

Oh also LOTS of reading .....

[SeasideSusie Remembering]

Thyb

I imagine there must be many and they're off living their lives rather than hanging around the forum

We have over 109,000 registered members, there are about 10,000 active members on a monthly basis.

For what it's worth, I have worked to optimise my nutrient levels and found out where my thyroid levels are best, and thyroid-wise I feel I am optimal; however, because of other health issues I will never be totally "well" but that's not to do with my thyroid.

[YellowApple in reply to SeasideSusie]

Hi Seaside Susie, if you don’t mind me asking, what do you mean by ‘optimising your nutrient level’? (I have hypothyroid for about a year now and am just learning about how to improve my health- frustratingly I had hyperthyroid about 20yrs ago and now it’s gone the other way)

[SeasideSusie Remembering in reply to YellowApple]

YellowApple

When I tested I had the following

Vit D - severe deficiency

Ferritin - low in range

Folate - bottom of range

B12 - just about OK

So I have addressed the problems with supplements (except iron) and now maintain them all at the recommended levels which are:

Vit D - 100-150nmol/L - I keep mine as close to 150 as possible and test twice a yer to check.

Ferritin - half way through range. I have to eat liver regularly to try and keep a reasonable ferritin level as my iron panel shows that I don't have iron deficiency and I'm not anaemic.

Folate - at least half way through range, a good bioavailable B Complex keeps this at the recommended level (I take Thorne Basic B)

B12 - Total B12 should be top of range, even 900-1000 pg/ml (or ng/L), Active B12 is good over 100. My B Complex maintains a good level of Active B12 for me.

Hypothyroidism (in particular Hashi's) tends to cause low nutrient levels so it's important to check them.

[SlowDragon Administrator]

Yes, absolutely....took 26 years and progress only possible after joining forum here. Realising the relevance of low vitamin levels and food intolerances

Now...four years on ....vitamins optimal by continuously supplementing, absolutely strictly gluten free and soya free. Always same brand of levothyroxine and T3 at each prescription. All testing done privately as NHS testing hopeless

[Nanaedake]

Yes, I'm fine. Took 10 years to figure it out. Better quality controls on levothyroxine production in UK since 2013 has helped along with supplements, change in diet and regular exercise. Stick to same brand levothyroxine too.

[Thyb in reply to Nanaedake]

Nanaedake

Could I ask which brand of levothyroxine suits you please.

I have tried all available brands in UK and all give me side effects to a greater or lesser degree.

I'm on Accord (used to be Actavis)...I 'think' for me it doesn't have 'as many side effects' as Eltroxin, Teva

[Thyb in reply to Nanaedake]

Nanaedake

I just read your profile. I noted you also have Osteoporosis as I do but I cannot take (Alendronic Acid) and I won't have Prolia injections as they are more likely than not to give me Major interactions with other Meds I take (I researched after having a bad reaction to just 1 AA). Pity Drs didn't research

[SlowDragon Administrator in reply to Thyb]

Hardly surprising you feel terrible on levothyroxine your taking such a tiny amount

Levothyroxine doesn’t top up your thyroid, it replaces it

You have extremely Low Ft3

Low Ft3 leads to osteoporosis

[Thyb in reply to SlowDragon]

Endo/GP tell me t3 meds would make me feel worse...I don't understand where 'they're coming from'.

..If levo replaces thyroid I 'guess it would be foolish to stop taking it' - levo makes me exhausted, headache, no motivation etc etc..

But, when I quit taking it Feb/March time (approx 4 weeks) I eventually felt better in myself??

[SlowDragon Administrator in reply to Thyb]

I wasn’t suggesting you needed T3

But a higher dose of levothyroxine

Levothyroxine dose needs to be high enough to bring Ft4 towards top of range and Ft3 will rise too

Until on full replacement dose of levothyroxine you won’t know if you need T3

Majority of people manage on just levothyroxine...but it must be at high enough dose....guidelines are to increase upwards in 25mcg steps.

Typical full replacement dose is 1.6mcg per kilo Of your weight - so if you weight around 9st 4lb(63kg) likely to need 100mcg levothyroxine per day

If weight around 12st 4lb...dose 125mcg

Just taking tiny amount of levothyroxine turns your own thyroid off, but doesn’t give you high enough dose to function

[Thyb in reply to SlowDragon]

Thank you.

After recent bloods I am still waiting for Endo to ring me as all appmnts cancelled due to covid 'of course'.

I Have 'upped my dose a little' from 50mcg x 4 times a week, 25mcg x 3 times a week To 50mcg daily (only for last few days).

I'm going to ask Endo for liquid Tirosint as I may just absorb liquid better.

I weigh 68kg or 10st 7lbs. I've never had more than 50mcg daily in past 9 years I've been on it. GP/Endo have never suggested it

[SlowDragon Administrator in reply to Thyb]

That doesn’t surprise me ....there’s over 109,000 members on here because average understanding and thyroid treatment Is woefully inadequate

Most endocrinologists are diabetes specialists

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists

[e-mail]

Getting FULL thyroid and vitamin testing 6-8 weeks after increase in levothyroxine to 50mcg .

Then get dose increased to 75mcg...even if initially you start on 50mcg/75mcg on alternate days

[SlowDragon Administrator in reply to Thyb]

Looking on your profile

When did you quit smoking?

Quitting smoking is frequently a trigger for Hashimoto’s to get noticeably worse. That’s not a reason not to quit, but it’s frequently a reason thyroid problem is diagnosed or gets worse within 2 years of quitting

[Thyb in reply to SlowDragon]

Unfortunately, I smoke again. Stress response maybe or prob lack of willpower/motivation (both zero). In 5-6 weeks I will up to 75/50 and see if that helps. GP won't routinely do VIT tests nor ft3 so I will order from Blue Horizons in 4 weeks for full thyroid and Vits to be tested.

Many thanks for all your knowledge and info

[SlowDragon Administrator in reply to Thyb]

Really need to wait 6-8 weeks minimum after increase in dose to 50mcg per day

[SlowDragon Administrator in reply to Thyb]

EXTREMELY common to initially feel better when you stop levothyroxine, as your body recognises lack of Ft4 and tries to push your thyroid to make more. But thyroid can’t keep up and you either slowly become increasingly hypothyroid, eventually would end up in coma ....or you can become extremely unwell pretty quickly

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

As you have been on too low a dose too long, it can be a struggle to increase dose upwards. But it’s still necessary to do so

25mcg dose increase in levothyroxine after each blood test. Or if that’s not tolerated, increase by 12.5mcg per day

Retesting 6-8 weeks after each dose increase

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.

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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[Thyb in reply to SlowDragon]

Looked at BMJ Thank you for link. I just don't know why levo makes me exhausted, low blood pressure, irritable, miserable etc etc...I have never put any weight on.

As I wake up a few times during the night I still haven't got around to carrying out regenerus 24 hr cortisol andrenal DHEA Saliva tests......One day!

[Thyb in reply to SlowDragon]

Coma part is VERY SCARY

....I started taking levo again in March when my Sister told me 'all main organs could pack up'- she lives 100's of miles away but she was diagnosed in her 40's she's 70 this Month - she needs catnaps during day but manages well on 125/100 levo

[SlowDragon Administrator in reply to Thyb]

So your sister is likely on correct dose for her weight

She may benefit from improving her vitamins (testing first)

Even when on correct dose of levothyroxine many/most patients benefit from regularly testing and supplementing to maintain OPTIMAL vitamin levels

Obviously you are very under medicated at moment and when on too low a dose you are going to feel tired, irritable and insomnia or poor sleep is frequently an issue

We need good Ft3 levels for good sleep

Low vitamin D often affects sleep too

Not much point testing cortisol at this stage

[Thyb in reply to SlowDragon]

SlowDragon

Why 'not much point testing cortisol at this stage'??

I am taking 1-2000iu softgel oil capsules daily + 25000iu INVITAD3 2 Weekly... My last test for vit D was about 66 nmol

My Sister only sees her GP Occasionally and believes what GP tells her. Sees life through 'Rose coloured glasses'..... I have told her the frequent colds she gets could be down to lack of vitamin C, tiredness maybe B vits, B12 etc but she lives in her own 'bubble' with Husband.

All symptoms you mentioned I sure have!!!! Plodding on

[SlowDragon Administrator in reply to Thyb]

When very under medicated and hypothyroid your adrenals try to over compensate for lack of thyroid hormones by chucking out adrenaline.....hence so many hypothyroid patients feel wired and anxious

Initially if tested cortisol you might see high cortisol levels

Eventually as adrenals become exhausted cortisol output starts to falter ...level then may drop low

The solution is to get vitamin levels optimal and levothyroxine dose up to full dose ...then adrenals can rest and recover

If it proves impossible to increase levothyroxine, then testing cortisol and DHEA may be useful to see if cortisol levels are high or low

[Thyb in reply to SlowDragon]

I am anxious but not 'wired' too lethargic to be wired 'I think',

Lower back pain for about 4 weeks...could be spine or adrenals, lack of appetite most days, light headed sometimes but that's when blood pressure is low...I have a wrist blood pressure monitor 'GP reckons it's accurate'.

Can't believe at the beggining of this Century I studied for 4 years Full time.....1 year College for A levels followed by 3 Years at Uni....Today, seems like an impossibility, meaning I sure would not be able to concentrate (wouldn't have been able to concentrate for a few years 'thinking about it'..

...I should not moan/whine as there's always others worse off....Sorry for waffling/moaning

I sure do wish EVERYONE WELL AND THE VERY BEST. Can only imagine what others are going through

[Nanaedake in reply to Thyb]

I've improved bone through exercise, diet and supplements and took risedronate for 1 year.

I find Actavis/Accord suits me best. I haven't been underdosed so osteoporosis isn't result of insufficient thyroid hormone but more likely due to lack of calcium and vitamin D despite really good diet with dairy. I was overdosed due to lack of levothyroxine bioequivalence prior to 2013. But nobody knows if it can be a contributing factor. No research to date.

[silverfox7]

I’m good as well! So why am I still in the group? Best one I’ve come across but I also remember the days when I was a newbie so like to help when I can be it in agreement or if I found a different approach that worked for me plus it keeps me up to date as well thanks to our hardworking admins.

I think consistency is so important once you find something that works for you.

From reading on here I think some doctors keep changing their advice, most likely they are confused themselves! So remember you can always post results on here for advice and I’m sure someone will agree they are or were the same Never be afraid to ask about anything you are unsure of, we can grow together!

[Thyb in reply to silverfox7]

silverfox7. You worded message Beautifully......Thank you for your input...Much appreciated

[Steni]

Interesting question which I think I have posted myself at one point - I think Seaside Susie is right the people who feel well are not on the whole on this forum regularly. I should also say that I am feeling better and better all the time as I work out the dosages that work for me - don’t give up !

[ThyroQueen]

I feel much better, thanks to this group! I do have flares, I am having a terrible one now thanks to a period of severe overworking, but in general I am much better than I was two or three years ago.

[Gcart]

Whatever my thyroid was doing before cancer and TT 4/5 years ago I felt so ill all the time .

With the help from this forum I now am enjoying a quality of life I could only have dreamt of .

Prior to TT it lasted about 20 years of all sorts of ills.

Into my 70s now and have to force myself to look forward and not feel anger about doctors lack of help that could have been given with a bit of thought on their part !

Big thanks to these guys on here 😘