Fed up with trying, this just isn't working for me - Thyroid UK

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Fed up with trying, this just isn't working for me

Kitten-whiskers profile image
16 Replies

Hello everyone,

I am sorry to be a wet blanket but I am so miserable and full of pain. I have done everything I know to get me well but I am still going round it circles, nothing seems to have changed, I still can't tolerate T3 for more that a couple of days at a time, I am having a tiny dose of 2mcg a day divided in to 4 doses, first one at 5:30am, then have to have four days off - so no Thyroid medication at all. I feel like I am never going to get better and I have got to spend the rest of my life like this - that doesn't bare thinking about. Does anyone have any info to help, I take lots of vitamins/minerals, stuff to help the gut lining, Cider Vinegar for low stomach acid, lots of Vitamin C for the Adrenals and still the T3 has the same effect, it is not only T3, Nutri Thyroid has the same effect, and Levo has been awful. Their seems to be no hope left - any info would be much appreciated xx

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Kitten-whiskers
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16 Replies
Hennerton profile image
Hennerton

Have you done a cortisol saliva test with Genova? It may show up an adrenal problem for which you genuinely need help from your GP, although I believe they will not accept the saliva test as evidence of an adrenal problem. If it showed low, you could then ask your GP to do whatever they do to test it. I just had a morning level taken, which was considered fine and nothing more was done. If your morning is low, I think they would do another test, more complicated. My only other suggestion would be to try to build up minuscule amounts of T4, T3 and NDT. I am currently on all three and feel the best ever, although slightly frightened of writing that, as it is bound to go wrong tomorrow!

Kitten-whiskers profile image
Kitten-whiskers in reply toHennerton

Hello Hennerton,

Over two years ago I had the Saliva test done and it came back that the levels were low through throughout the day and evening, I did take the report to different GP's and they told me I do not have an adrenal problem and basically all that was wrong was a slightly underactive Thyroid. I purchased from another country Hydrocortisone but I had a bad reaction to that, I then tried Predisone and had a shocking reaction to that, so have been taking lots of Vitamin C. My docs really are not interested and he is keen to stop my medication at any opportunity - so I have stopped going to the surgery.

I am to frightened to take levo but I could try Armour - I have never had that. I hope things keep going right for you.

Best wishes

shaws profile image
shawsAdministrator

Maybe Naturethroid would suit you as it is hypoallergenic. Both T4 and T3 are synthetic and your body may prefer NDT.

Kitten-whiskers profile image
Kitten-whiskers in reply toshaws

Hello Shaws,

How do I know If I need the Hypoallergenic one, is their a test? Can the doctor Prescribe it?

T3 does me good, so would it still be possible for me to be allergic to it? I did try Nutri Thyroid and that is natural and the same thing happen then. I started the CT3M method two days a go, to see if i get improvement. after that I am not sure what to do.

Kind regards

shaws profile image
shawsAdministrator in reply toKitten-whiskers

I just thought as you couldn't tolerate T3 (liothyronine) or maybe T4 (levothyroxine) (you say you are frightened to take T4). You shouldn't have a problem with either of the hormones but you may have a problem with the fillers/binders in them. 2mcg is extremely small and Dr Lowe says that our receptor T3 cells need to be flooded but if you are sensitive that's obviously a problem.

This is an excerpt:-

"The physician should call a pharmacy and request the leaflet given to patients when they pick up a Cytomel (T3) prescription. The physician would learn, as the patient leaflet on Cytomel explains, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." Other than Nystatin, he probably will find that no other drug he might prescribe is as free from adverse effects as T3."

web.archive.org/web/2010103...

I just don't understand how a 2mcg dose of T3 (1 day on medication and 4 days off) is expected to work.

Kitten-whiskers profile image
Kitten-whiskers in reply toshaws

Hello Shaws,

2mcg a day isnt enough but it does ease certain pain. I have tried taking daily doses, or larger doses and things get so bad, i have no choice but to stop it. The GP told me to take a quarter of a tablet a week, I am trying to build up the T3 so I can take a normal dose. The GP said I only need a tiny about of Thyroid medication ( I do not agree with that) and I understand what Dr Lowe has said about such a small dose, but If I can't take anymore at the minute then I have to get by the best I can. I believe other things are at play here and I do believe that the Dr's taking about 15 years to pick up on the Thyroid problem has created other issues. I hope that it is the adrenals that is making it hard to take the T3 and that when the CT3M kicks in I will be able to increase it to a normal level and be well.

Best wishes

shaws profile image
shawsAdministrator in reply toKitten-whiskers

I am sorry you are having such problems and I do hope that you achieve a dose which gives you relief from your symptoms. I don't know if this link will be helpful re Selenium.

chriskresser.com/selenium-t...

Kitten-whiskers profile image
Kitten-whiskers in reply toshaws

Thank you very much Shaws, I hope this nightmare will be over soon

Hennerton profile image
Hennerton in reply toKitten-whiskers

I read a recipe for an adrenal cocktail on one of the other thyroid sites. Here it is:

1/2 cup orange juice

1/2 teaspoon cream of tartar

1/2 teaspoon Himalayan salt

Mix together and drink before bed.

Don't know how palatable that is but might be worth a try. I know other people who drink lemon juice in water every morning for adrenals. If I were you I would throw everything at it!

Kitten-whiskers profile image
Kitten-whiskers in reply toHennerton

Thank you Hennerton - I will give it ago

Redwinegirl profile image
Redwinegirl

I have no answers but I wanted to give you a hug xx

Kitten-whiskers profile image
Kitten-whiskers in reply toRedwinegirl

Thank you x

Barbaraj profile image
Barbaraj

Please check out mthfr.net If anything you learn resonates with you then please feel free to get back to me as I have a ton of information to set you on the road to health. I felt just as you do from my mid twenties on yet now, at the age of sixty seven, I have found some answers. Kind Regards, Barbaraj

Kitten-whiskers profile image
Kitten-whiskers

Hello Barbara,

Thank you for the link, It looks very involved, I will have a look at it tomorrow when I am not so exhausted.

I am so glad to hear you are well, It gives me hope, I started suffering when I was about 12, my body seemed to be coping until I started taking the Thyroid medication and since then my life has been a nightmare, shocking symptoms every day since.

Kind regards

Debs

humanbean profile image
humanbean

Hi,

I just wanted to comment on your use of cider vinegar for low stomach acid. It doesn't actually do anything to help your body to digest your food or break it down in any way. All the cider vinegar does is to mask the symptoms caused by low acid.

In order to really help your low stomach acid you need a proper substitute, not just something to mask the symptoms. Look online for information about supplements of betaine hydrochloride (or betaine HCL) and pepsin. A common dosage per capsule or pill is 600mg of betaine hydrochloride although they also come in lower dosages. The pepsin content of the capsules is to help the body break down protein - both the Betaine HCl and the pepsin are required in order to successfully break it down.

In the UK Betaine HCL and pepsin can be bought without a prescription. I used to be able to buy it in a local high street shop, but now I can only buy online. Please do lots of research first before even considering trying these pills though - they are not suitable for everyone..

Some useful links :

scdlifestyle.com/2012/03/ho...

scdlifestyle.com/2013/10/4-... (This one is particularly important!)

Hope this helps.

Kitten-whiskers profile image
Kitten-whiskers in reply tohumanbean

Hello Humanbean,

Thank you very much for this - I will read all the information and see if it will suit me.

Much appreciated - thank you

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