Iodine testing

[Cassandra]

Currently on 100 thyroxine but still feel unwell. Next month I am going to see another gp who apparently also deals in alternative remedies. He has sent me out a questionnaire to complete prior half hour appointment and asked that I painted on patch of iodine and note the results. I did this and patch had completely gone after 6 hours. Don't know why but am beginning to question if he is the right person for me to see. Can you ask on here if anyone has attended this gp or is it not allowed to quote his name.

[helvella Administrator]

You may wish to read this:

thyroid.about.com/library/d...

The standard medical iodine test is the 24-hour urinary iodine test. There is at least one other that is occasionally performed.

Rod

[galathea]

Cassandra, you are allowed to mention the doctors name, to ask about him, but replies detailing exact treatments would have to be via your private inbox.

So its ok, to ask "can anyone tell me if they have been seen by dr peatfileld,". but not ok to reply with ". yes he gave me whatever......"

(At least that's the way I have always understood it)

G x

[marram in reply to galathea]

No, galathea, that's not quite right. The guidelines specifically state:

20. Do not name and shame identifiable individuals.

24. Do not post contact details of endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession.

True, we do see references to Dr P but he is no longer registered with the GMC, does not prescribe, and therefore has nothing to fear from the 'certain areas'.

If member choose to pass on information via private messages, it is outside Admin control, because they are exactly that - private:

16. Thyroid UK cannot be held responsible for the content of ‘Private Messages’ or the outcome of any action taken as a result of any such message. The messaging system is private and cannot be accessed by the Admin team.

I do hope that this clarifies the situation.

Marie XX

[galathea in reply to marram]

Sorry, it doesn't clarify it. It is ok to post a sentence

Like.., has anyone seen dr smith. IsnT it? But its not ok to put dr smith gave me t3... Am I right?

[PinkNinja in reply to galathea]

Provided you don't give any contact details, I 'think' it is ok to name a name but all responses would have to be by personal message to avoid any possible contravention of the above guidelines. I will get back to you if it is anything different

[PinkNinja in reply to PinkNinja]

... and please don't give details of treatments, like you say...

[marram in reply to galathea]

galathea, if you use the name and the hospital that is not only naming but also revealing details which might enable the individual to be traced. It is best not to name doctors or endos publicly at all.

Is there some particular reason why you wish to get this straight in your mind? If so, please bear in mind the following.

If anyone wants information on specific doctors or hospitals, they have only to send an email to Louise, who is always very happy to help anyone in this regard, if she can.

The same applies, if anyone has a particularly good or bad experience, it will benefit the whole community if they share this information with her.

The more people do this, the better support TUK can offer in this respect.

Marie XX

[PinkNinja in reply to marram]

Ah, I see what you are saying. If the hospital is being named, an initial might be best (i.e. Dr N at such-and-such hospital). This could then be further confirmed in a personal message, such as...

'Hi. Do you mean Dr N*****? I have seen them and ....."

[galathea in reply to marram]

Hi Marie, no particular reason, was just trying to help the original poster, because despite all the replies on this thread, she hasn't named the doctor she is going to see, so her question about whether he is the right doctor for her remains unanswered.

G x

[Marz]

Iodine testing and treatment is controversial and confusing for most of us. Do you have Hashimotos ? - if so I have read that it can exacerbate symptoms. I think Heloise will be along with one of Dr Clarks' videos that I believe covers the topic ! Dr Brownstein too ! We only need a teaspoon during our whole life ....all I know is that I have always craved salt and have been known to dampen my finger and mop it up !!

[Cassandra in reply to Marz]

It has never been explained to me other than my thyroid is underactive so take thyroxine and that will sort things out. I remember a few years ago having private test for antibodies and it was ok. The only reason I ask about this particular doctor is because it will work out quite expensive and this is something I cannot really afford at the minute and won't be able to afford in the future. The other side of that is feeling awful with no hope of feeling any better. My own gp asks what women of my age (63) expect from life.

Thanks to everyone who replied and if anyone has found a doctor in Northern Ireland I would love to hear from them via private message.

[Marz in reply to Cassandra]

Hi Cassandra - sorry to hear the attitude of your doctor. I once read that if a doctor said anything was to do with your age - then it was time to change your doctor Maybe post some of your latest blood tests and their ranges. Have you had all the basic tests done - Ferritin Iron Folates B12 VitD - they all need to have results HIGH in their ranges. It will make a HUGE difference to how you feel. You say your anti-bodies were OK - what does that mean - maybe time to have them checked again. How much T4 do you take ?

What are your symptoms that make you feel unwell. Maybe you don't want to share them - well that's OK.... Just for your information I am 67 and feel so much better having followed so much good advice on this forum. There is still room for improvement and I am still learning new things and still reading. Memory not brilliant so often have to go back and read again !

However I have just taken a yoga class this morning - and have three more this week and I still play a little tennis and walk my lovely Greek dog - and yes there are tough days too. So having been diagnosed with Crohns 40 years ago after struggling with Ileo-caecal TB I have endured endless operations - latterly spinal and hip operations in 2007. Diagnosed with Hashimotos in 2005 - so a long life of feeling unwell. Now feeling stronger than I have done for many years....so I believe you can become fitter as you age. It is a matter of finding the missing pieces of the jigsaw. For me moving over to T3 and taking larger than normal doses of B12 and D3 seems to have been the magic formula....also more recently I am being stricter with my diet.

We must not blame our age - I don't want to live for ever - just want a GOOD quality of the life that is left.

Hope you soon feel better.........

[Cassandra in reply to Marz]

Hi Marz

Some of my symptoms are insomnia (even though I feel exhausted), tearfulness, lots of fluid retention, hair thinning, awful memory, depression which antidepressants did not help, severe joint pain - the list is endless.

My results from last week:

FT4 20.6 (range 12 - 24)

TSH 0.36 (range 2 - 5)

T3 4.1 (range 3.1 - 6.8)

B12 , Vitamin D etc are all in the high range

My gp told me they have never prescribed T3 and that is why I was trying to find out a reliable person to contact in Northern Ireland. I am also scared that if I do get someone and go with the treatment it will be going against my own gp and that could have serious consequences.

[Marz in reply to Cassandra]

....sorry to be a pain but still no mention of anti-bodies and the ok result. Your results do look good but as we know it is how you feel that counts.

Have you considered removing gluten from your diet ? It can help all manner of conditions which I have learnt more about after watching the Gluten Summit - an on-line conference of various experts - from America. It may also be good to read - Why Isn't my Brain Working - by Datis Kharrazian - where you will read all manner of things causing problems with the brain - as in memory/depression etc. Also gluten rears its ugly head with brain health too - as some molecule or other can permeate the blood brain barrier. He has a website too which is full of useful information and you can sign up for a Newsletter. His cures are holistic and he is a Functional Medical Practitioner - which means they do not treat the symptoms but search for the underlying causes.

Would giving up gluten be difficult for you ? There are lots of websites to help you if you choose.....

Wishing you well....

[Cassandra in reply to Marz]

Hi Marz

Thank you so much for your advice - the people on these boards are always so kind and helpful.

I must look out the results from the antibody tests when I get home and I will post them.

Regarding gluten I have thought about trying to go gluten free for a while to see if it makes any difference. I know that it will be the hidden gluten in so much food that I will have the problem with but through trial and error I think I could cope.

[Marz in reply to Cassandra]

Am going to post about a few points I learnt from the Gluten Summit - may be of interest !

[Jmsho in reply to Cassandra]

Re going gluten free, I did this a year ago and found that it has helped with the intermittent energy crashes that i have had since being on thyroxine (before that I was on a permanent energy crash) My only warning would be to make sure to replace grains with other veg starches, as recently I inadvertently ate a very low carb diet and this had a very detrimental effect on my energy levels. Since making sure that I eat something like rice, potatoes, sweet potatoes or plantain everyday I feel tons better again. There is a lot of info on the internet esp in paleo diets. The one that I have found most helpful has been the Perfect Health Diet, which has a good website, and the book has some good info re thyroid heath.

[tegz in reply to Jmsho]

There are commercial GF products available which contain starchy foods. I've started to use GF flour [Asda, includes buckwheat] for home bread making which comes out far more crusty esp. if mixed with a small amount of Rye/Oats and use dough conditioner[Vit C etc.] in the mix [I'm not Celiac]

[Cassandra in reply to Marz]

Hi Marz

Results of anitbodies tests

Thyroid peroxidase antibodies negative

Result 32.70 IU/ml Ref range 0 - 60

Thyroglobulin Antibody negative

Result 68.00 IU/ml Ref range 0 - 115

[Marz in reply to Cassandra]

...good that you have low anti-bodies. Maybe have them checked again a couple of years. Things can change. Learning from the Gluten Summit was interesting - 89 different auto-immune conditions and that anti-bodies can lurk and be inactive for 40 years or more and then strike. Hope you are feeling better and continuing on your journey ......

[Heloise]

Cassandra, a doctor that I trust disputes this iodine test. I've read also that it may just be evaporation. Since some people don't do well on T4 only, is there any possibility you could try natural desiccated thyroid? I've also been posting videos which I think open up a new aspect of Hashimoto as an autoimmune disease and treating it as such might relieve more symptoms. They are five minutes each and cover 22 issues regarding thyroid. This is #13 youtube.com/watch?v=k_Kr5Rx...(Not working as expected?)