Do you have to take dessicated thyroid forever? - Thyroid UK

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Do you have to take dessicated thyroid forever?

kezza999 profile image
13 Replies

Hi,

Do you need to take dessicated thyroid forever like you have to take synthroid forever? I'm thinking of buying some as I really don't want to start levothyroxine. I'm not sure that I actually will need medication long term as my thyroid has been fluctuating a lot but I don't have any autoimmune disorders. I just want a bit of a boost justnow that I'll be able to stop when I feel better again. The one I'm thinking of buying is more like a vitamin as opposed to a medication,it's called natural sources raw thyroid-does anyone ever tried these before?

Thanks

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kezza999
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13 Replies
shaws profile image
shawsAdministrator

If you haven't been diagnosed and are just guessing I wouldn't advise self-medicating. You may do yourself harm and some of these products you mention may have very high hormone levels.

My suggestion is that you go to your GP, ask him to do full thyroid gland function tests, including Vitamin B12, Vit D, iron, ferritin and folate. Get a copy of the blood tests coplete with the ranges and post on a new question for someone to comment.

Believe me, and I would think most members on this forum would agree, that we would be SO HAPPY not to have a thyroid gland problem which is not improving with medication. It can be a miserable life and others just do not understand.

kezza999 profile image
kezza999 in reply to shaws

Hi yes I have had everything tested by my doctor,the only thing that came back was a high tsh. It has only been my tsh that has been fluctuating but I've been having lots of symptoms :(

shaws profile image
shawsAdministrator in reply to kezza999

Always get a print-out of your blood tests for your own records and so that you can post them, with the ranges. It will enable members to comment. We require the ranges as labs differ throughout the country.

Others will comment on your post and give you more information.

If you are diagnosed with a thyroid gland problem you usually have to take thyroid medication for life.

helvella profile image
helvellaAdministratorThyroid UK

Does that product contain any thyroid hormones? Or does it not?

At least two places say it contains thyroid tissue. Nowhere does it say that any thyroid hormones that it contained have been removed. But nor does it give any indication that it does contain thyroid hormones. Nor how much.

If it contains thyroid hormones, then the same principles apply as to any other thyroid hormone product – “natural” or synthetic. That is, dosing needs to be handled carefully.

If it does not contain any thyroid hormones, what has happened to them?

Also, we see the “for life” quote far too often. Certainly for many people, they are unable to produce enough thyroid hormone themselves and so need to take enough and to continue taking indefinitely. But at least some people do indeed only take thyroid hormones for a limited time. I don't think it makes any fundamental difference whether they are "natural" or synthetic.

The product has variable descriptions depending on where you see it listed. In one place it claims to be corn-free. In another that it contains maltodextrin made from corn!

However, all sources seem to agree it contains kelp. The main reason for taking kelp is as a source of iodine. Do you need that?

Don’t get me wrong, I do not know what the effect on you would be. But it does seem important to have considered what they contain and why they might or might not be a good idea.

Rod

kezza999 profile image
kezza999 in reply to helvella

Yes I know the ingredient differences is a bit worrying! My dr does believe my problem is a nutritional one as I do not have hashimotos. She tested vit d,iron ,folate, ferritin and b12 all came back optimal. She also told me she didn't even know how to test iodine, so I guess it's up to me to figure out the rest. I liked the idea of thyroid vitamins,everything you need in the one pill. :)

helvella profile image
helvellaAdministratorThyroid UK in reply to kezza999

I don't have Hashimoto's either. But thyroid hormone (in my case, ordinary levothyroxine) has made a big difference.

Not sure I'd put much faith in a doctor who doesn't even know how to find out how to test iodine! The answer is that the "standard" technique is a 24-hour urinary iodine collection and test of that.

Other techniques have been suggested and used, but that is used in,for example, research into the adequacy (or otherwise) of iodine.

However, to be fair, hardly anyone gets tested. Trying to remember if a single person here has been tested on NHS - and I can't recall a single person. Some have had it done privately.

Rod

sky00 profile image
sky00 in reply to helvella

hi rod my endo-in bangor has me currently doing a 24hr urine iodine test, as he feels that even with my fluctuating tsh levels highest has been 7--he feels i don't have hypothyroidism and my antibodies are none--so he states to me -you don't have a thyroid problem & i won't prescribe any thyroid medication, but i think you may have insufficient iodine--hence the urine test & he specialises in thyroid as an endo, so yes nhs test- north wales also told me to stop taking insulin, only metformin to lose the huge amount of weight gain and other symptoms.. i think like kezza 999 perhaps a short term boost of something for the thyroid..

helvella profile image
helvellaAdministratorThyroid UK in reply to sky00

I am very happy to read that - my argument against iodine supplementation is simple: You need to know where you are before you start.

Going to the local health food shop and buying kelp (or whatever) when you have no idea where you are is a recipe for going wrong. Being tested, finding out what your current level is, then making appropriate adjustments, is exactly what I wish happened to many more people.

Hope it all goes well for you.

Rod

susymac profile image
susymac

I wouldnt take it while tests are on going. It may make a difference but it may also skew up any test results you are having or need done.

Chiquitita profile image
Chiquitita

Hi there

I don’t know whether this will just add to the confusion, but thought I’d drop a line based on my experience…

As you may know, there are two main thyroid antibody types: Anti-TPO antibodies and Thyroglobulin antibodies. Very unfortunately, labs in the UK generally test for anti-TPO antibodies only in the first instance and GPs tend to rule out Hashimoto based on this, which is a big mistake. Generally labs only proceed to test Thyroglobulin antibodies when the anti-TPO antibodies are positive.

Whilst it is true that anti-TPO antibodies are more common, it is perfectly possible to have anti-Thyroglobulin antibodies only, and this often does not get detected in this country because labs don’t test for them and GPs don’t query this.

Here is my experience: I was diaganosed with Hashimoto abroad based on (a) a thyroid ultrasound which showed my thyroid gland looks damaged and is half the size it should be and (b) a complete thyroid panel, including, amongst other things, tests for BOTH antibody types with results showing negative TPO antibodies BUT positive (very high) anti-thyroglobulin antibodies.

With this information I went to my GP in the UK. He dismissed it and decided to repeat tests here. When the results came back, he denied my diagnosis, he said there is no problem with my thyroid and certainly I do not have Hashimoto at all… I had to insist on seeing my results. When I finally extracted the lab test results, I saw my anti-thyroglubulin antibodies had NOT been tested and queried this. I was then told that labs will not test for them unless you previously have a result of positive anti-TPO antibodies. This is madness. But unfortunately this seems to be the norm.

I am now under treatment by a private doctor for Hashimoto and improving (slowly). He was appalled to hear my story but told me he sees this in his practice over and over again. There are many thyroid patients out there convinced they do not have a Hashimoto because either they have never been tested for any kind of antibodies in the first place, or they have only ever been tested for ONE kind and not the other and been told by their GPs that Hashimoto is not the problem, when it is.

I continue to monitor my thyroid antibody levels regularly. My tests always come back with negative anti-TPO antibodies… and thankfully my anti-thyroglobulin antibodies have dramatically decreased thanks to very careful dietary changes (going 100% gluten free has been key), but they are still positive, so still working on reducing them. Clearly it is only one kind of antibodies which is causing my condition. With the NHS lab policy of only testing for one kind of thyroid antibodies, I would go totally undetected. It is unfair that I have to go private to get treatment.

Obviously this is not everyone’s experience, but the moral of the story is: do not just take your GPs word for it, always demand to see a printout of tests yourself so you know what has or hasn’t been tested, what the actual results are and do your own research…

All the best!

sky00 profile image
sky00 in reply to Chiquitita

this is blowing my mind--for months my gp has had a different opinion from the endo--based mostly on many symptoms and on elevated blood tests--but the endo has insisted nothing wrong with my thyroid- because i have no antibodies--however he only used the one nhs anti body test-but i see here from yourself, one can be negative while the other is positive, mama mia i will certainly ask my gp what's up with this other test & see how we can go about ( without endo ) if possible or to another endo further away, which he is ready to do, as he clearly feels i am being under treated and under diagnosed... well well really glad i saw your post.. thank you

I tried the "natural sources raw thyroid" you mention. Before doing so I contacted the supplier (who is not, apparently, the manufacturer) to ask exactly what you're asking: how much thyroid extract is there in it? Nobody could tell me. The tabs have an mcg which measures content, as I recall - but do not say what that content is. I'm not at all sure they contain anything useful. They did me neither good nor hard. For the money IMHO they're a rip off.

You might think about taking something that supports adrenal function. Improvement in that area might help your fluctuating thyroid?

But. like the man said, don't take anything while they're testing you.

noyb profile image
noyb

you want to take natural thyroid. first off don't self medicate. if your thyroid levels are low and you don't have hashimoto's you could have another root cause, investigate that further. also if you are an animal lover please don't cause pigs to be raised and slaughtered just so they can give you their thyroid that's sick and no human's health is worth that . sorry . especially not when you just want a "pick me up" at the expense of a living being put in through hell for your "pick me up" seriously. exercise and take vitamins find a natural way jeez other than using a living creatures body parts as an energy drink or vitamin wth

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