Self Medicating : Hello. I'm a 45 year old male... - Thyroid UK

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Arnold_Layne profile image
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Hello. I'm a 45 year old male in the UK with hypo symptoms: lack of energy, feeling cold, constipation, brain fog and poor memory. My last test was 18 months ago:

Serum T4 level 12.4 pmol/L (12 - 22)

Serum TSH level 2.87 mU/L (0.3 - 4.2)

These two were the only tests in the thyroid section of a wider panel of blood tests ordered by my gp when I presented with lack of energy - he failed to diagnose anything and I haven't bothered approaching him since about possible thyroid medication as the results were "within range". My average oral wake-up temperature was 95.84 F / 35.47 C before starting any medication apart from iodine.

Never having taken thyroid medication before, I recently started self-medicating with 1/2 grain NDT (WP Thyroid), now increased to 3/4 grain (1/4 grain tablets). Should I continue with 1/4 grain increases or can I increase by 1/2 grain? (I take it in one dose at least half an hour before breakfast and I also take 1mg iodine/day).

All thoughts very welcome and I'd especially appreciate PMs with sources of medication without prescription. (I used the one at San Mateo, CA first time). Apart from the one in Vanuatu are there any other potential sources?

Thanks

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Arnold_Layne
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9 Replies

Have you done a private test to check your thyroid antibodies? Worth it in my experience.

in reply to

Also, why do you think your iodine is low? (I'm not saying it isn't, just curious.) Do you drink milk? Have you had an iodine test of any kind?

Arnold_Layne profile image
Arnold_Layne in reply to

I must get thyroid antibodies testing done.

As for iodine, I am a member of Trackyourplaque.com/Cureality.com and they are quite big on iodine (maybe deficiency is more of a problem in America). They also say there are no useful iodine tests.

in reply to Arnold_Layne

The docs seem to think that there is a urine test for iodine which works. That I think is the test on which the relatively recent research showing that iodine deficiency is common among young girls in the UK was based. Astoundingly, there is no research on iodine levels in men in the UK, or research on iodine levels in the general population in the UK, nor can I find research on iodine levels in celiacs, which might give us a clue to whether absorption problems reduce iodine levels as well as iron levels.

Iodine deficiency ought to be less of a problem in the US because iodine is added to salt there, but some say that it is unstable and has little impact.

Given that most of us are not going to get round to testing our pee, looking at diet seems worth doing - that's why I wondered if you have always drunk milk, which is high in iodine.

There is a v big controversy over taking iodine in hypo, of which you may be aware. Basically, science hasn't worked out the conundrum of why iodine deficiency leads to goitre, but also in some cases iodine supply after iodine deficiency seems to cause, accelerate or perhaps uncover hypothyroidism.

There remains a possibility that iodine could make things worse.

What is your view?

Arnold_Layne profile image
Arnold_Layne in reply to

I haven't drunk milk for over 30 years but I've recently started eating cheese and also kefir (very cheap in Polish shops). I eat low-carb now but it would probably be better to kick dairy as well as carby foods.

.

From Cureality: Rarely, someone with hypothyroidism or goiter will develop abnormal thyroid responses to iodine. This occurs because of iodine deficiency present before correction distorts thyroid function; adding iodine can actually worsen the situation temporarily. Iodine replacement may therefore be best undertaken alongside monitoring of thyroid function by you and your health care provider. Alternatively, some people have success by increasing the dose of iodine gradually, e.g., starting at the RDA of 150 mcg per day, building up by 50-100 mcg increments gradually over 6 months until the desired dose, e.g., 500 mcg per day, is achieved. Anyone with a history of Hashimoto’s thyroiditis, Graves disease, thyroid cancer or thyroid nodules should also supplement iodine only under supervision of a knowledgeable healthcare provider (though, sadly, knowledgeable healthcare providers aware of all the issues surrounding iodine are quite rare).

Unfortunately, dose-escalating studies for iodine that track thyroid function have not been thoroughly explored. If the RDA for iodine of 150 mcg yields some improvement of thyroid measures, would 300 mcg, 600, 900, even 10,000 mcg further improve thyroid function or other aspects of health? Sadly, sufficient study has not yet been done to answer these questions.

Should we take a lesson from the Japanese, who, through their dietary reliance on seaweed (e.g., kelp, kombu, nori, etc.) and abundant seafood, have iodine intakes 30- to 100-fold higher (5,280-13,800 mcg per day) without excessive thyroid disease and reduced incidence of fibrocystic breast disease and breast cancer (Patrick 2008)? This is also unclear, though it suggests that much higher intakes of iodine are, for the majority, safe. It may even be preferable.

From Cureality forum: Usually everyone's fine on 1mg or less a day of iodine.

You can watch thyroid levels after you start taking to see if it affects your numbers at all.

Another highly respected poster on Cureality/Trackyourplaque forums said that NDT did not help her until she upped iodine supplementation to 1mg / day (which I take myself in the form of Lugol's).

in reply to Arnold_Layne

Thanks for all that Arnold. It is v interesting and helpful that there is someone who found iodine was necessary before NDT worked. Clearly she was iodine deficient, but not every will be I would guess. Maybe that's wrong. Maybe all hypos at diagnosis are iodine deficient. Who knows?

Cureality is giving a very broad summary but it's too broad to answer any questions and my guess is because the starting point is "iodine is good" the evidence to the contrary might not be being weighed dispassionately.

The Japanese do have hypothyroidism, my memory is that on the few city studies it is in fact quite high, but not as high as some of city studies in the States, where of course salt has iodine added.

But then when I start thinking about any piece of research it starts to fall apart.

It seems to me that we can draw few conclusions from the Japanese - for a start they are a very distinct group racially, and we know that race can make a difference in hypo incidence. And also we dropped a couple of nuclear bombs on them and they have leaky nuclear plants. And the city charts I have seen for Japan and the US are based on TSH figures, and of course none of us on this forum think they are very reliable guides to hypothyroidism.

Iceland might be a better place for northern Europeans to look for a less complicated association between hypo and iodine, and my memory is (but obviously my memory is shot by the hypo) that in this fish-eating population there has fewer with Hashi's antibodies compared with similar northern European populations.

Even this is association and not causation. And maybe if it were causation there's a window where it is protective - that sufficient iodine in the womb or in childhood would help, but not later.

I guess all we can do on this forum is swap our real life experiences and see if we can spot some patterns.

I am carrying on with the iodine in fairly low doses...

Clutter profile image
Clutter

Arnold_Layne, I would continue with 1/4 grain increases as you may be close to an optimal dose and you may overshoot your sweet spot with 1/2 grain increases. You should hold at 1.5 - 2 grains for 4-6 weeks and have a thyroid test including FT3 before increasing further.

thyrophoenix.com/adjusting_...

Private thyroid tests can be ordered from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

Jazzw profile image
Jazzw

Nothing to add, just wanted to welcome you to the self-medicating club. :)

You may find there are no antibodies - I haven't managed to have a result with them showing up to the party yet.

And no sources to add here - you've cited both of mine. :)

Teuchter profile image
Teuchter

Welcome to the forum Arnold. Here you will find many members who have first-hand knowledge of thyroid related problems, blood test results etc which exceed that of most GPs and many endocrinologists (THOUGH IT SHOULD BE ASSUMED THAT NONE HAVE ANY MEDICAL TRAINING). You will also find empathy and support from all members, however difficult things become.

I am a 47 year old male diagnosed in 2001. I hope that your route back to health is shorter than mine. I have found that I can only tolerate thyroxine when also taking supplements to support testosterone production and medication to inhibit conversion to oestrogen. I hope you fare better on NDT, but bear in mind that all our hormones are linked: a change in the level of one can affect others, leading to unexpected symptoms.

Also, whilst forum members are knowledgeable and helpful, bear in mind that men are a small minority of hypothyroid sufferers, symptoms may be slightly different, and, as I have found by trial and error, we may respond to slightly different treatments.

I would advise you to be careful what you tell your GP: I have read here of at least one GP who threatened to withdraw all services from a patient who self-medicated.

All the best

Geoff.

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