How to Get Your Hypothyroidism Medication Right - Thyroid UK

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How to Get Your Hypothyroidism Medication Right

shaws profile image
shawsAdministrator
24 Replies

I found this post of interest:-

How to Get Your Hypothyroidism Medication Right

3 Steps to Thyroid Treatment|

How Not to Treat Hypothyroidism|

The Gut-Thyroid Connection|

Why Do I Still Have Symptoms?|

Is Combination T4/T3 Better?|

Is Natural Thyroid Hormone Better?|

Can You Get off Thyroid Medication?|

Grave’s Disease|

Gut Treatments|

Retesting|

Thyroid Medication is Only Part of the Solution

drruscio.com/hypothyroidism...

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shaws
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24 Replies
nightingale-56 profile image
nightingale-56

Thanks for posting shaws . If only Doctors tested for all the other things that could lead to thyroid problems, then we might improve a lot. Lack of testing and different reasons for having Thyroid problems means that one treatment does not cover all of us.

Billyboy2u profile image
Billyboy2u in reply tonightingale-56

True but how much would that cost ?

Sorry should have made it clear. How much would it cost the NHS. Having so many requesting test.

nightingale-56 profile image
nightingale-56 in reply toBillyboy2u

We should not have to pay in UK.

Billyboy2u profile image
Billyboy2u in reply tonightingale-56

See my edited post

nightingale-56 profile image
nightingale-56 in reply toBillyboy2u

Regardless, we still should not have to pay as we already pay via National Insurance, and it could be even cheaper for them if they treated us properly. If we have Doctors, then surely they should be treating us fully, so other problems do not occur?

Billyboy2u profile image
Billyboy2u in reply tonightingale-56

I agree. But who’s first in line. Cancer ? Thyroid, Heart Disease. There’s just so many want a price of that little pot of money.

Its just not feasible to have everything checked for only one thing to come back positive.

Money makes the world go round

nightingale-56 profile image
nightingale-56 in reply toBillyboy2u

Maybe there would not be so many other things to be treated if Thyroid problems were sorted properly? This does not get away from the fact that we are not treated properly with very poor medication now. I have experienced very poor treatment over the past 11 years now.

Billyboy2u profile image
Billyboy2u in reply tonightingale-56

Your right and I completely agree with you. BUT. There’s only so much money to go around.

Your doctors job is to get you better or almost better at the cheapest way possible.

Those with cancer think the same about there treatment. Everyone is in the same boat.

Also it depends where you live too a post code lottery. I have only the highest praise for my endo and GP. Also what works for jack might not work with Jill

nightingale-56 profile image
nightingale-56 in reply toBillyboy2u

I also agree with you about only having so much money to treat all, but to get us better requires the right testing to be done, and if they are just going to test one hormone then it should be FT3 as being the most important test for those of us who have had thyroid surgery or have a Central condition. This is not done and we are lumped in with other thyroid conditions. If we were tested properly then we would not need other medications for conditions caused by poor treatment, making medicine much cheaper.

There should be no such thing as a Postcode Lottery as we all pay the same amount of National Insurance .

shaws profile image
shawsAdministrator in reply toBillyboy2u

If GPs were better trained and knew which hormones restore our health, then we wouldn't need so many blood tests as it would all depend upon how the patient 'felt' on a particular dose, i.e. feel well with no symptoms and who feel as if they're back to 'normal health.

nightingale-56 profile image
nightingale-56 in reply toshaws

You've hit the nail on the head there shaws . Having felt quite good on medication in the past, the current Levothyroxine available is not as good as it was in the past. I feel this is because NHS are chasing ever more cheaper medication, which do not have such good quality excipients in them.

Nanny23 profile image
Nanny23

Thanks for posting.

Blackpanther46 profile image
Blackpanther46

Thanks for posting that article states that T3/T4 therapy isn’t the answer then so I’m a bit confused now as other information states it is best .

shaws profile image
shawsAdministrator in reply toBlackpanther46

I am also surprised as many do feel better on a T3/T4 combination. The more I reduced T4 when on a T4/T3 trial, the better I became and was best on T3 alone. We all vary in how our bodies react.

Millions seem to do fine on levothyroxine alone and they will not be searching the internet but levo made me far more unwell than when I diagnosed myself an hour or two after GP told me there was nothing wrong with my blood test results. He didn't seem to know that a TSH of 100 meant the patient was very hypothyroid,.

I hope you are slowly recovering your health.

Blackpanther46 profile image
Blackpanther46 in reply toshaws

I’ve read so much about people not doing well on levothyroxine though . I’m surprised that not more people are searching for better treatment and with T3 .

God your blood test was tsh 100 , then it’s no wonder that we don’t have faith in the doctor if they say there’s nothing wrong . Personally I’d rather take my health in my own hands and keep searching if something isn’t making me feel good .

Hopefully my health will keep getting better now I’m on thyroid s and doing other stuff . Hope your okay aswell 😊

shaws profile image
shawsAdministrator in reply toBlackpanther46

Even with the print-out showing 100 for TSH - marked on the print-out was 'no action required'. I hadn't even heard of hypothyroidism. So it would appear GPs also know little.

Blackpanther46 profile image
Blackpanther46 in reply toshaws

I can’t believe that ! That’s terrible . We always have to keep a step ahead of our health it seems .

shaws profile image
shawsAdministrator in reply toBlackpanther46

I still have the print-out.

radd profile image
radd in reply toBlackpanther46

Blackpanther46,

T4/T3 isn’t the answer for everyone but only a small subset with conversion issues, etc, and then it becomes a life saver.

The article is relating that there are far more people who manage to function well on Levothyroxine mono-therapy and others who if they addressed their iron/nutrient deficiencies might also manage well. This forum attracts people who are or have been extremely ill and therefore gives a false impression of the efficacy of Levothyroxine.

But I am an advocate of adding T3 as it helped me find wellbeing. I liked the article except for it failing to mention the absolute necessity of FT3 testing for all whether medicating T3 or not.

shaws profile image
shawsAdministrator in reply toradd

If you want to alert another member you have to put an @ sign before their name and they will be alerted. i.e. radd and a selection will appear and you select the one you want

😆

Flecmac profile image
Flecmac

Wow!!! I started T3/T4 combo end of last year and reading the section about that makes me worry that it may not be best after all!! I am sleeping better but still have some symptoms. Also struggling with my lower back pain, sitting is so painful, and my right knee/leg .

My NHS endo agreeed my trial and has extended it for two months as he expected my GP to take over T3 scripts, which is unlikely. I was going to write to my CCG as they don't allow T3 in my area, but I need to be sure that taking it is right for me. My T3 is at the very top of the range and my T4 has gone down a little. I take 62 mcg Levo and 10mcg Liothyronine split.

Any advice would be gratefully appreciated.

Many Thanks.

Redlester profile image
Redlester in reply toFlecmac

I also had the pain when sitting thing - dx by GP as coccydynia [not sure I spelled that correctly] and said there was nothing I could do about it - he said there was nothing wrong with my thyroid function (after testing TSH only - sigh). I tried to help myself by placing a pillow on my armchair at home but "sitting" on hard chairs when out of the house was just excruciating. I did a trial of T3 only last year when I got fed up with the total absence of any kind of useful care from the NHS. The supposed coccydynia which there was "nothing I could do about" disappeared completely and has not come back. Wonder if you changed your T32/T4 ratio so that you were taking more T3 and less levo whether it would impact that sitting pain. Do you know if you convert the levo well?

Serendipitious profile image
Serendipitious

Thanks. I used to do fine on T4 alone but that changed a few years ago after some stressful events.

Dr Eric Balcavage is another practitioner who advocates looking at other areas before jumping on T3. He has some really unique, interesting and insightful posts on Instagram.

I’ve previously listened to Dr Ruscio’s podcasts and they’re pretty good. I’m going to read his book next. 👍🏼

FancyPants54 profile image
FancyPants54

That's really depressing to me. Still says TSH is the most reliable test. Disses T3.

I've been ill for years. Never had a celiac test though. Guess I should put it on the list. Levo has made me worse (but of course I don't know if I would have bee worse without it) and now T3 doesn't seem to be giving me any help either.

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