Diagnosed finally

[Happy-go-lucky]

I was diagnosed with under active thyroid and the relief I felt that it wasn't me that was going mad. I was cold, cold hands and feet, felt dizzy. But am on levothyroxine now 25mg so see what happens.

[Clutter]

Do you have results and lab references? If not, ask your GP for a print out and post a new question.

Make sure your TFT is retested in 6 weeks so your meds can be reviewed and adjusted if necessary. Request printout every time you are retested.

Take your levo with water an hour before, or two hours after food, coffee, tea. You may prefer to take it last thing at night. Don't take levo before blood test, it will skew result.

Hope you feel better in a couple of weeks but if not don't be afraid to request an increase. 25mcg is a very low dose.

[Loobs39 in reply to Clutter]

Just a thought - I have a blood test tmrw morning (early as a fasting test) - should I take my Levo tonight?? It makes sense that I would as the test will be 10 hours after taking it so I would have thought the results would be a true indication of my levels??

[Stourie in reply to Loobs39]

Hi if you take your levo at night you will still have quite a lot in your blood so will give a high t4 and low tsh result so the dr will probably want to drop your dose, but that levo has to do you until your next bedtime dose. If you are feeling ok then you don't want to drop your dose. Hope that helps.

Jo xx

[Loobs39 in reply to Stourie]

Thanks I wont take it until afterward

[MaryMary]

Hi, really pleased you have a diagnosis at last. Just a few more tips from my experience:

Keep a record of the type of Levo you're taking e.g. Teva, Actavis and the batch number.

Keep diary notes of how your symptoms improve and whether any new symptoms may arise.

Remember to be patient, it may take a while before your levels and body adjust. It's not a quick fix like antibiotics!

Good luck and I hope you're one of the fortunate ones who Levo works really well for.

Mary

[Redditch]

Hey there... glad you've started the journey towards recovery.. Be aware it may take a long time to get the medication right and you feeling well.. but we're all here to help.. If you also have Antibodies, then your condition might get worse before it gets better.. so you need to make some lifestyle changes as well..

You will need.... vitamin D3, Vitamin C, Selenium, Magnesium and B vitamins

Co-enzyme Q10 and a good quality daily vitamin which you will need to take 2 of

You need a really optimal supply of all of these for the levothyroxine to be able to work.

Good luck buddy.

[Hidden in reply to Redditch]

Redditch - you say "You will need.... vitamin D3, Vitamin C, Selenium, Magnesium and B vitamins Co-enzyme Q10 and a good quality daily vitamin which you will need to take 2 of"?

It is important to make sure we do actually need to supplement these. because it is possible to OD on some supplements. It is also important to try and get the right amount of vitamins and minerals by adapting our lifestyle.

Too much vitamin D for example is harmful and its a good idea to get these tested first as supplementing may not be necessary if you already have a very balanced diet and a good outdoor lifestyle. Its not a one rule fits all thing I feel.

[Redditch in reply to Hidden]

Absolute rubbish.. it's practically impossible to OD on vitamin D and the "ranges" which were set in the 1950s are about to be rewritten.....

[helvella Administrator Thyroid UK in reply to Redditch]

Your statement, being so strong, needs to be backed up to the hilt.

Most people can take vitamin D supplements with no problems. However, care

is needed in a few situations. These situations include:

You may need more than the

usual dose of vitamin D if

you’re taking certain medicines

which interfere with vitamin D.

These include: carbamazepine,

phenytoin, primidone, barbiturates

and some medicines used for the

treatment of HIV infection.

Don’t take vitamin D if you have

high blood calcium levels, unless

under the care of your physician.

If you’re taking certain other

medicines: digoxin for an

irregular heartbeat (atrial

fibrillation) or thiazide diuretics

such as hydrochlorothiazide or

bendroflumethiazide (commonly

used to treat high blood pressure).

In this situation, don’t take high

doses of vitamin D. You should also

have your digoxin level monitored

more closely if you’re taking

vitamin D.

If you have one of these

medical conditions: primary

hyperparathyroidism, Hodgkin’s

or non-Hodgkin’s lymphoma, a

granulomatous disease, kidney

stones, some types of kidney

disease, liver disease or hormonal

disease, you should get advice from

a specialist.

Yes! In fact, that is the Vitamin D

Council’s recommendation. On days that you

do not get enough full body sun exposure, it

is important to take a supplement. For most

people on the Monday-Friday indoor work

schedule, that means taking a supplement

5-6 days a week and getting sun exposure

on a day or two during the weekend.

The above from the booklet linked from this post:

healthunlocked.com/thyroidu...

There are most certainly people who feel desperately ill if they take more than a tiny amount of vitamin D.

I feel that your statement is over-confident, lacking in caution and requires to be taken in the context of the individual.

Rod

[Redditch in reply to helvella]

Well I disagree entirely.. I think the recent meeting in London on Vitamin D particularly confirms that having too little is far far more serious an issue than having too much and can do long term serious damage to people. Scaremongering about not taking vitamin supplements until you get a valid check is a nonsense.. If you dose yourself up for one month you can't possibly do yourself any harm at all and you might well feel better.. GPs, as well all know.. a) don't understand the significance and b) are reluctant to test and the ranges are 60 years out of date...

ALL of the books recommend these vitamins.. and Rufus did proper research for his presentation at the TPA conference....

tpauk.com/forum/content.php...

Vitamin D - Rufus Greenbaum

and proper research has been done on K2

articles.mercola.com/sites/...

FACT if you are low on B12 and D3.. you can be very poorly, very tired, with muscle pains, depression and lethargy

what's the FACTs about having TOO MUCH? There really isn't anyuthing to worry about.. having too little can do you much more harm than having too much..

Vitamin D3 doesn't store for very long, so you just stop taking it..

[PinkNinja in reply to Redditch]

mayoclinic.com/health/vitam...

vitamindcouncil.org/about-v...

While vitamin d toxicity is rare if you are supplementing with modest amounts, there are some people that do need to be careful as Rod had outlined. One of our members had serious heart issues as a result of increased blood calcium levels from taking vitamin d. Yes, toxicity is rare and most people can supplement sensibly with no issues but it shouldn't be ignored as a possibility.

[bantam12 in reply to Redditch]

Redditch the others are right with the cautions over Vit D. I had severe deficiency, level of 12, I was given 800iu daily and even that low dose made me ill. I then had calcium tests done and found out I had Hyperparathyroidism, my calcium was high as was my pth so taking the Vit D was making things worse as it sends my calcium even higher which is dangerous. I am still deficient but cannot take Vit D.

Vit D is not a simple vitamin that can do no harm, believe me it can.

[PinkNinja in reply to bantam12]

Sorry you're having issues with vitamin d. I hope you find some way to get your levels up. Safe tanning beds with UVB might be a possibility if they are available in salons in this country.

Take care

Carolyn x

[helvella Administrator Thyroid UK in reply to PinkNinja]

They are available in some areas - as it happens, nowhere near where I am - I did check them out. (At least, none of the more obvious places have them - despite other branches of the same chains having them.)

[helvella Administrator Thyroid UK in reply to Redditch]

You are free to disagree to your heart's content.

Your link to Rufus Greenbaum's presentation does not work for me - I can see the MP3 but it fails to run so I have no idea what he says.

Vascular calcification does seem to me to be something that people can suffer and has unpleasant consequences.

Even if vitamin K2 is "the answer", adding that in your response above when it was not present in the post which said "it's practically impossible to OD on vitamin D" rather suggests that vitamin D without adequate K2 could indeed be damaging.

[Redditch in reply to helvella]

Try asking him

[e-mail]

[helvella Administrator Thyroid UK in reply to Redditch]

I have absolutely no intention of commencing a private email interaction with someone I don't know, who does not know me, and where the subject of discourse would be unknown to me because I have not yet seen/heard what he says.

Most especially, I do not usually do "private" communications because I prefer everything to be in the open. Perhaps you would care to invite him to this thread?

Would he be happy with his email address being posted in public?

[bantam12 in reply to helvella]

I listened to some of the talk, he is not a doctor and is commercially involved, so wants to sell supplements.

Redditch, he does say vit d should be taken with caution and only after addressing other possible issues, so he agrees it is not right to start downing the pills without tests first.

[Redditch in reply to bantam12]

No he's not a doctor, he's a retired engineer . sorry do we think Doctors know more about this condition than Dr Peatfield or the late Dr Skinner?

My GP self-admittedly knows less than the patient who has read all the books

Dr Peatfield and Dr Wilson both advocate heavy use of vitamins... and let's face it guys.. the necessary tests will only tell her if she need supplements it won't tell her if she'll have a poor reaction... so there are two lots of arguments here....

a) don't take unless you know you're under - pretty irrelevant as the ranges are hopeless out of date and as Peatfield and Wilson state, not relevant to us hypothyroids anyway

b) don't take in case they make you ill and is a different argument and surely if they make you ill that's terrible, but how many people really get ill.. is it even 10%... You can't say it's not worth it to try them for a month.. really you can't. when if they don't make you ill, they could make you feel so much better...

[helvella Administrator Thyroid UK in reply to Redditch]

Quotes from Rufus Greenbaum's website:

Warnings:

There are a very few people who have a genetic problem with Vitamin D, such as sufferers from Thyroid problems or Sarcoidosis ( too sensitive ) or Coeliac or Crohn’s disease ( not sensitive enough ) You will need detailed advice from your doctor or specialist.

AND

What do I have already ?

The only reliable way to know is to have a blood test for 25-hydroxyVitaminD or 25(OH)D

The options are:

Ask your doctor for a test.

Have the test done privately

Many doctors are under pressure to save the cost of testing, or they have been told that they are only allowed one test per year for each patient.

If your doctor does do a test, ask them for a copy of the result and file it carefully away for comparison with later tests.

If you want to have the test done privately there is an NHS hospital in Birmingham that offers the test direct to the public.

Check out vitamindtest.org.uk or phone [phone]

vitaminduk.com/2012/02/21/h...

He also several times mentions vitamin D council (from whom I took my earlier quotes).

Rod

[Redditch in reply to helvella]

Coeliac population 1% Crohn's 0.3%.. and if diagnosed they already know that

[Hidden in reply to Redditch]

I may not know all the facts but I'm definitely not speaking rubbish. I know it's quite easy for those of us with long term conditions to disparage the medical profession and I will say that my GP and rheumatologist both refused to test my vitamin D levels so I had them done privately - so I have good reason to be cynical myself. But there is obviously no point in spending money on vitamin supplements unless they are actually needed. It seems to me that the human race has evolved without supplements reasonably well and those in relatively good health should be able to get enough from a really good diet and being in the sunshine regularly. If someone can't get out because they are incarcerated or they have other reasons to be concerned they might have vitamin or mineral deficiencies then it doesn't cost too much to get tested privately if your GP won't test. But surely it's more sensible to get tested than to throw supplements down yourself randomly - which may be superfluous, or worse still may be harmful or clash with other medications?

For myself I only decided to take AdCal D3 because I have been on steroids and other powerful immunosuppressant drugs, have a serious medical condition as well as autoimmune Hypothyroidism, so am at high risk of Osteoporosis. My GP agreed to prescribe them when I presented him with the evidence that I had a level of 28 (normal range 50-200). He then agreed that my calcium levels were low too. Also I live in the northern hemisphere in a place which has the highest MS levels in the world so am particularly high risk for vitamin D deficiency because of weather and short daylight hours in the winter. But otherwise I would balk at chucking any more tablets down myself for no good reason.

[Redditch in reply to Hidden]

I have a very healthy organic diet and use to have 5 sunny holidays a year but had vitamin D in my boots because of my thyroid condition and because of sun cream and because of our miserable 2011 wettest year on record...

The moment I started supplementing I felt better... really much better.. my running time on the treadmill was 7 minutes every day before I nearly fell off with fatigue but as soon as I started taking it that went up to 22 minutes. and because I too was on ADCAL I couldn't take it within 4 hours of my thyroxine.. so if I took adcal first thing before gym I could do 22 minutes and if I took Thyroxine first thing leaving adcal until lunchtime it went back down to about 12 minutes...

I always had a very healthy organic diet.. but the amounts of C and D that are advocated at a cellular level by Messrs Peatfield and Wilson are way beyond what you can get in a healthy diet.. I followed Peatfields book to the letter and I am Really WELL... Lots of people are....

I was in a terrible state at the point of diagnosis.. I now take only a small maintenance dose of Thryoxine because my antibodies have gone.. I am better..

I still take C, D, Selenium, Multivitamins, codliver oil, co-enzyme Q10, K2, DHEA, ginseng... and have private comprehensive tests every three months. I stopped taking all this for a couple of weeks once and definitely felt lower.. Placebo? Maybe... But I must say.. I feel back to my old self

[Hidden in reply to Redditch]

The point is that you do get yourself tested and have gemmed up on your condition. Some of us have several complex diseases which overlap and we take powerful drugs, despite looking after ourselves very well as you do.

One of the drugs I was taking involved using 25mg folic acid a week. I certainly didn't want to take additional supplements without getting myself blood checked and telling my GP.

So all I'm saying is that each of us here has a different set of health issues and not everyone will benefit from supplements you are promoting - for some they might interact adversely.

Sorry we seem to have hijacked this thread of yours Happy Go Lucky. I do apologise.

[Moggie in reply to Hidden]

I agree - Happy go lucky please don't supplement until you have had the necessary tests done as, like Rarebird has pointed out, I to think it can be dangerous to supplement on a "just in case" basis.

For example - the more VitD in your body the calcium your body makes so if you are supplementing with VitD and it is already at the top of the range the extra calcium the body will make can be deposited in your kidney (causing kidney stones) or, worse case synario, the heart. So please always get tests done BEFORE you supplement anything. Also taking supplements will only muddy the waters if your GP does want to run tests as he will not be getting a correct picture.

Hope this helps.

Moggie x

[Redditch in reply to Moggie]

It's simple to test yourself for vitamin D deficiency.. Press hard on your sternum and tibia.. if it hurts.. you are 93% likely to be Vitamin D deficient (Mayo clinic)

[Hidden in reply to Redditch]

Redditch, are you a medical doctor? You sound like one with your 'one size fits all' approach to vitamins.

Thanks to people like you, I have several times unwittingly made myself quite poorly by taking vitamin supplements as suggested by people like yourself, only to then find out I'm intolerant to even low doses.

Despite testing low for vit D, I'm intolerant to all variants of D3 supplements even at the minimum dose of 400iu daily. I also became very poorly by taking modest doses of B vitamins, selenium and vit C and others that I can't now recall to mind.

I think it's very important to stress that we are ALL different and should proceeed with caution until we know how something is going to affect us as an individual.

[Hidden]

Welcome to the club Happy

It really is a relief, we know how you feel!

They are supposed to start on a low dose to start with so they should have you in every 6 weeks. They did me anyway. Now on 125mcg.

This time last year I was fainting in Sainsburys! All very dramatic lol.

Merry Christmas. Xx

[Moggie]

Hi Happy-go-lucky,

As you can tell your post has had a mixed response in opinions - which is one of the good things about this site as it helps people come to an informed decision - but just wanted to apologise if you are a bit lost as to what is going on with the debate, which is essentially "to supplement or not to supplement" before being tested.

As you can tell by my comment I come down firmly on the "get tested first" side but others have different opinions.

Hope it has not confused or upset you in any way.

Moggie x

[Clutter in reply to Moggie]

I'm inclined to agree. My tests showed high outside of range ferritin which isnt typical of hypothyroidism, so supplementing iron may not have been good for me & would certainly have been a waste of money. VitD & Folate were very deficient and are supplemented via scrip. B12 was low in range so I am self supplementing and will add B1, B2, B6, VitC, magnesium & zinc at RDA after Xmas. I hope to be bursting with energy & brio come Spring

[Happy-go-lucky]

Thank you everyone. But I will speak to my gp about what is safe to take