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Feeling like nothing is working

Ndobins profile image
Ndobins
ā€¢35 Replies

Morning

I am so frustrated, I'm self injecting B12 ( wouldn't have realised there was an issue if Marz hadnt suggested I test) but I thought I was improving but seem to have gone down hill again. Last results in October showed my t4 going down from 16.5 to 11. So I'm thinking by now it's dropped further . My antibodies are slightly raised .

What do people think of Ashwagandha? Does anyone take it for thyroid? I've read it can help a lot!

Thanks in advance :)

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Ndobins
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shaws profile image
shawsAdministrator

I don't know anything about Ashwagandha but your priority is to get your thyroid hormones at an optimum level and relief of symptoms. If you had a blood test in October you need another one, so make the appointment for the earliest, fasting (you can drink water) and leave 24 hours between your last dose of levo and the test and take afterwards. Seeing you are supplementing with B12 also ask GP to do all of your vitamins/minerals.

Get a print-out of your new results with the ranges and put them on a new post.

We have to get our thyroid hormones balanced first and I don't think taking additional supplements until you know exactly if you need your dose increased.

Ndobins profile image
Ndobinsā€¢ in reply toshaws

Thank you shaws . You make total sense :) I will get an appointment booked. I literally feel like walking away today :( so tired and down. I really thought the b12 was starting to work, I shall continue with that but I feel my thyroid has never been looked at correctly with the raised antibodies, but the Drs don't seem bothered by that . In October the dr said she doubts she'll raise my medication as 125 mcg is high .

Thank u

shaws profile image
shawsAdministratorā€¢ in reply toNdobins

125mcg is 'high' for whom. Not for you obviously if you are suffering. If you were on an optimum dose you'd feel well with relief of symptoms. I only rarely get a blood test now. Maybe a yearly one but I feel I don't need it at present (cross fingers) :)

Ndobins profile image
Ndobinsā€¢ in reply toshaws

Which vitamins and minerals should I ask for?

shaws profile image
shawsAdministratorā€¢ in reply toNdobins

B12, Vit D, iron, ferritin and folate.

Ruthi profile image
Ruthi

Ashwaghanda is an adaptogenic drug and helps those with disturbed cortisol levels to stabilise. I've not heard of it doing anything else useful.

Your adrenals may well be out of whack, but the first thing is to get your thyroid sorted.

Polaris profile image
Polarisā€¢ in reply toRuthi

My whole family found Ashwaganda helped with stamina, energy, etc. so I was delighted to read it was one of the herbs recommended by Dr Kharrizian, neurologist and leading expert/ researcher into Autoimmune Disease) in his excellent books, "Why do I Still have Thyroid Symptoms?" and "Why isn't my Brain Working?".

Ruthi profile image
Ruthiā€¢ in reply toPolaris

I might have to read Why isn't my brain working? Ashwaghanda did little for me. Rhodiola now, that did wake me up!

Ndobins profile image
Ndobinsā€¢ in reply toRuthi

Ditto on the brain šŸ˜‚šŸ˜

Ndobins profile image
Ndobins

Once I've had the thyroid tested I'll consider it then, I'll try anything :)

Marz profile image
Marz

Are you supplementing with a good B complex. I expect you know that B12 works with Folate in the body. Ferritin and VitD also need to be optimal for those pesky thyroid hormones to work :-)

Ndobins profile image
Ndobinsā€¢ in reply toMarz

Yep I'm taking 5 mg of folic acid and I'm not taking a b complex , I'm going to order a b complex and spatone and see if that helps, I'm guessing my ferritin will have dropped now, would explain tiredness its been suggested before ?

Marz profile image
Marzā€¢ in reply toNdobins

Don't forget the VitC and to keep Iron away from Levo - at least 4 hours I have read. You could eat liver pate :-) I make it most weeks .... Thorne Research do a good B Complex.

Ndobins profile image
Ndobinsā€¢ in reply toMarz

Marz ive looked up the Thorne b complex, do I need just the basic one?

Marz profile image
Marzā€¢ in reply toNdobins

That's the one I take. Without checking I cannot remember the difference between their Complexes !!

Ndobins profile image
Ndobinsā€¢ in reply toMarz

I'll get ordering then šŸ‘

Ndobins profile image
Ndobins

Thank you all, feeling more positive already :) šŸ’ X x

I cannot advise you in a medical opinion or as a user of thyroxine and vitamin b

treatment except to say that there may be negative side effects with vitamin b

therapy and the use of thyroxine. You should go back to your specialist

or ask a nurse doctor about this, as they might be able to refer you to the

right person. Failing this you can go to your chemist alphega or Lloyds and

they have advisers who can point you to see an nhs specialist UK.

Hope you feel better soon. gadgrantg

humanbean profile image
humanbeanā€¢ in reply to

It would be almost unheard of for a medical professional to know anything much about vitamins in the UK. They aren't trained in nutrition and think supplements just create expensive urine. They also don't know or don't believe that low levels of nutrients in the body can make people feel dreadful.

I'm curious where you have read about unwanted effects when taking B vitamins and thyroxine. The reports I've read on the combo are all positive.

ā€¢ in reply tohumanbean

hi there - I m interested in your knowledge on vitamins and

would like to know where you found your research from.

I have information about vitamins and their benefits from my husband who used to work for one of the biggest pharmeceutical companies in the world. A product called

orovite 7 is still available - a neighbour who took it for a pick me up found her white hair which she had had for over twenty years started to return to its natural colour. No research available for this benefit of taking the combi vitamins - but a curious puzzle!

I take redoxon with zinc 1000mg for throat problems. I have a goitre but am wary of treatment as like many people I have intolerances allergies to certain foods and substances. The product mentioned helps with gum disease if your gums bleed.

Vitamin b is meant to be helped in absorption by taking vitamin

C.

Orovite C combines the vitamins b and c to increase the absorption of the vitamins.

You can still buy it from some chemists and can order it.

Wish you every success in your health - the thyroid is a complex gland - it is at the heart of your immune system.

gadgrant

humanbean profile image
humanbeanā€¢ in reply to

There is lots of information online on the role of vitamins and minerals in thyroid disease. Apart from the personal experience of so many people on this forum who have supplemented various vitamins and minerals which have been low in range or under the reference range and have felt better for doing so, there are other sources of info :

thyroiduk.org.uk/tuk/treatm...

tpauk.com/main/article/low-...

hypothyroidmom.com/10-nutri...

chriskresser.com/the-role-o...

thyroidnation.com/look-vita...

ā€¢ in reply tohumanbean

Read 2 top articles on vitamins an minerals with interest. I went on to read NHS choice in vitamins and minerals. They mention the daily does needed as a supplement, but they say too much B 12 can be harmful. They explained some vitamins are stored in the liver for depletion. These include the ADEK vits.

Vitamin c and b are not stored and are water soluble

as you know already.

Mentioned a lot of trace elements such as copper

selenium listed - others - never heard of boron and a lot of others which can be found in a normal diet. Vegeables and foods giving natural supplies of these elemens are listed.

Vitamin c helps with absorption of iron. Some products have vitamins c combined with iron which

are easily assimilated into the blood stream wihout side effects such as nausea and constipation.

With cuts prescriptions rely on products wihout vitamin c.

Thanks for getting my thinking cap on.

Hillwoman profile image
Hillwomanā€¢ in reply to

The information about "too much" B12 being harmful is erroneous, but is frequently repeated by doctors. No upper limit for safety purposes has ever been established. Surplus B12 is expelled in the urine.

For further information, I suggest visiting the PAS forum and reading the pinned posts, which are all backed up by research.

ā€¢ in reply toHillwoman

Thank you for the information.

I'm sure you are right about upper limits in research. Sometimes people eat something or take a large dose of a vitamin which makes them ill. It doesn't go into research as the people concerned aren't in trials to assess doses.

They might have an allergy.

Hillwoman profile image
Hillwomanā€¢ in reply to

It is possible to have an allergy to orally-supplemented B12, but it is exceedingly rare. I would have to dig out my pernicious anaemia references, but I do remember reading a suggestion that it may actually be one of the transcobalamins, the transport proteins, that causes the reaction.

Occasionally, parenteral treatment with hydroxocobalamin can cause anaphylaxis, which is why people with PA must always have their first loading injection performed by a health professional. One member of the PAS forum has had this experience, and he is now treated with cyanocobalamin instead.

ā€¢ in reply toHillwoman

Thank you so much for the dedicated care in research.

I responded to another member of the health community to say I have no experience of B12 injections but parentrovite helped with a kidney infection with delirium.

Thank you for confirming that allergy is possible with B12 vitamin in low or high dose.

ā€¢ in reply toHillwoman

Can you comment concerning the use of antibiotics,

imported from India containing New Delhi metallo-beta-lactamase NDM enzyme that makes bacteria resistant to many antibiotics with people with thyroid conditions. The Daily Telegraph 17th January 2017.

Thank you

Hillwoman profile image
Hillwomanā€¢ in reply to

I'm aware of the story, but I've no knowledge of this field, I'm afraid.

humanbean profile image
humanbeanā€¢ in reply to

stichtingb12tekort.nl/weten...

The above article tackles the subject of high dose B12 and mis-perceptions about it being dangerous.

ā€¢ in reply tohumanbean

Had an interesting e mail from a health professional re B12 - in rare cases B12 reacts with a protein and can cause allergy.

When the B12 injections are administered they have to use a different B12 formulation to screen out the allergen.

Hillwalker knows the benefit of B12 from research in high doses. As a non user of

B12 injections, I can't comment on the use in your medical condition but can say that another vitamin B with vitamin c injection

Parentrovite helped with a kidney infection with delirium. It is used for toxic conditions which affect the brain such as infections, alcoholism, certain psychotic conditions. This formulation does not contain B12 but contains lower doses of different B vitamins with vitamin C which improves absorption.

You can look it up on SmithklineGlaxo website which lists all their drugs.

On reading the information you sent I could see that the T hormones can be affected with calcium and magnesium which negate the effects in some cases of your therapy.

Cheers!

Clutter profile image
Clutterā€¢ in reply to

Gadgrantg,

A pharmacist can't refer patients to medical specialists, that has to be done via GPs.

ā€¢ in reply toClutter

Hi there clutter - I thought the same as you however my local pharmacist alphega has a drop in facility by appointment which my family have found helpful eg a baby using a dummy had oral thrush from the milk in the dummy. The pharmacist advisor was able to advise whether to go to the G.P.

Certain pharmacies have this drop in facility. The pharmacist should know about your medication and its effects as they have

a five year training in the subject. Lloyds Rowlands and Alphega

have this drop in facility. You can look up their branches online and can text online to their doctors online with your health issues. There are bound to be others in your area.

Kind regards Gadgrant.

Clutter profile image
Clutterā€¢ in reply to

Gadgrantf,

The pharmacists can deal with minor ailments and injuries but they can't refer patients to specialists. GPs refer to specialists.

ā€¢ in reply toClutter

Yes you are right but you can go on Lloyds pharmacy online service and receive advice from a doctor.

I went through a pharmacist who took a skin scan.

This scan was sent to an independent dermatologist

who wrote back to me with a letter to take to the G.P.

The G.P. referred me quickly through to NHS.

I was glad I went to the pharmacist who had this facility. best wishes. gadgrant

Your pharmacist should know about your medication

and may help you.

hi there - read with interest your description of how B12 isn't working.

I know that vitamin B is a good tonic. I have no experience of vitamin B 12 injections but have had experience of Parentrovite injections SmithKlineBeecham- this is a compound of B vitamins in injectable form

vit B1 10mg B2 2mg B3 100mg B5 5mg B 6 2mg with Vitamin C.

This was given for a serious kidney infection and is said to have anti viral properties. It is used for other medical reasons where the brain is affected

eg severe alcoholism. It probably saved my life with antibiotics.

Generic versions may be available. I have no idea if this can be bought online for injection or given by nhs. Best wishes Gadgrant

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