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Hypothyroid, talk to me about iodine deificiency, kelp and medication please

(33 Posts)
knackeredoutmum Fri 07-Dec-12 13:15:27

As my name says, I am exhausted and wake up every day tired and aching all over, I am very short tempered and starting to feel unusual levels of anxiety over trivial things - I am only 40 and dont have arthritis or anything similar.

My TSH has been rising over the years with 3.5 4 years ago and 4.8 6 months ago.

So now Im wondering if this could be a thyroid problem.

GP practice has labelled my results as "normal" and are very unlikely to medicate unless a fresh test reveals a higher result. I know they treat in the US at a lower level though.

Anyway, Im just wondering, IF the reason for the problem is iodine deficieny (I dont cook rice, potatoes or veg with salt and neither do I add it at the table) how long would it take before I felt much better on kelp suppplements? How many weeks roughly?

Could levels of 4.8 which have risen over the years reflect an iodine deficiency or would this pattern only fit thyroid problem?

I dont want to bother with the kelp if its risky or pointless as I would rather get on with some medical treatment if it is needed.

On the other hand, I dont want to start lifeling medication and GP visits and bloodtests if a simple kelp supplement would have done the job.

Is it possible for it to be a thyroid problem, I take the kelp, and end up causing more harm due to not treating the actual problem by taking medicine? Or is the kelp the same as the medicine confused confused confused

Any advice?

Thanks

digerd Tue 11-Dec-12 13:35:08

Hazelnutt
The problem with me is, GP attributes all my problems to ageing and arthritis.
I also need an hour's rest in bed in the afternoon, since reaching retirement age. Also, I have a natural high pulse rate about 90 at rest and over 100 when excited, and "don't want to know" when I dance for 2 hours - low key dancing. And have a heart valve leakage. So difficult for GP and me to know.
If I take more Thyroxine, it could increase my heart rate and be dangerous.
A case of "the devil you know", for me and GP I think

lem31 Sun 09-Dec-12 21:35:31

Speaking from my experience: my doc said it was low, about the same as yours. I felt awful so deinitely could be why you feel so bad. Doc wouldn't put me on medication as borderline. I tried sea kelp and I defo felt a little better and results went to normal within 6 months. a year later though and back lower again until it went to 26 requiring a high dose of thyroxine!
Ask your doc about ways to help-they will be able to give you advice but unfortunately it is likely to be a waiting game until it packs up altogether. They won't put you on meds until they have to though so try anything to help alleviate symptoms, even if it seems like it is masking the issue. Reflexology also helped me feel better. Keep getting regular tests and good luck! X

knackeredoutmum Sun 09-Dec-12 14:10:12

right, thank you all for the links.

Since i know my TSH is approximately 5 (and no reason to think it will have gone up to 10 since last tested in April) I have found a home pinprick test for antibodies only for about £50 from the thyroiduk site, or a full home pinprick thyroid test including antibodies for £125.

My goal is to get treatment if I have a thyroid problem that the NHS accepts. So, with what doctors would call a normal thyroid of 5, I can see from an online NHS flowchart for practitioners, that I will only get treatment if I test positive for antibodies, and over 5 for TSH on 2 occasions.

So my conclusion is that the £50 antibody test should be enough to get me checked out properly at the doctors if it is positive OR tell me that there is no way any NHS GP is going to prescribe anything anyway if it is negative. Therefore no point in paying for the more expensive full test?

What do you reckon?

blondietinsellyminx Sun 09-Dec-12 13:36:38

Merci tbh if my GP ignored the official guidelines i'd complain to the practice manager as they'd need to be aware for insurance reasons! And I would decline to see that GP again.

mercibucket Sun 09-Dec-12 11:57:26

www.homebloodtest.co.uk

I used them alongside nhs tests to see my t3 level and the results were pretty much identical to the nhs results (unscientific but maybe helpful)

I don't think they can test for antibodies with the fingerprick tests though and an antibodies test would be useful for you

mercibucket Sun 09-Dec-12 11:57:26

www.homebloodtest.co.uk

I used them alongside nhs tests to see my t3 level and the results were pretty much identical to the nhs results (unscientific but maybe helpful)

I don't think they can test for antibodies with the fingerprick tests though and an antibodies test would be useful for you

mercibucket Sun 09-Dec-12 11:52:45

Thanks, Blondie, I don't remember reading that. I can tell you about a conversation I had with my crap GP (I also have a good GP) though, where he told me it would be on his head if I suffered any ill effects from having too low a tsh and he wasn't interested in the CKS guidelines or GP notebook. Tosser. What can you do when medical professionals don't care about CKS?

Erm, I will try to remember what that website is called. Ypur GP might not accept their results though, be warned, not because the labs are dubious but because the NHS is very suspicious of anything from the private sector imo. There are some dubious labs out there but genova and blue horizon are both certified

mercibucket Sun 09-Dec-12 11:52:45

Thanks, Blondie, I don't remember reading that. I can tell you about a conversation I had with my crap GP (I also have a good GP) though, where he told me it would be on his head if I suffered any ill effects from having too low a tsh and he wasn't interested in the CKS guidelines or GP notebook. Tosser. What can you do when medical professionals don't care about CKS?

Erm, I will try to remember what that website is called. Ypur GP might not accept their results though, be warned, not because the labs are dubious but because the NHS is very suspicious of anything from the private sector imo. There are some dubious labs out there but genova and blue horizon are both certified

blondietinsellyminx Sun 09-Dec-12 10:21:09

Just popping on to say that in the UK, TSH for women of childbearing age should be between 0.5-2.0, according to the NHS CKS website.

I felt atrocious with a TSH of 5.5

knackeredoutmum Sun 09-Dec-12 10:20:36

I found blue horizon but not fingerprint site, cld you link for me? If you have time could you link to the discount code? Also, are medics satisfied that fingerprick tets for thyroid are as accurate as blood draws?

Blue horizon offering free ferritin with full thyroid test!!

mercibucket Sun 09-Dec-12 10:12:34

Do you feel ok on 50 with tsh of 5 digerd? If you feel fine, then that is an ok level for you. I felt like death on that level and needed 2 hours sleep in the day, I even felt crap with tsh 2.5. So I guess we are all different. It's the feeling ok that's the important part imo.

For the tests, I can recommend blue horizon and their linked company which does fingerprick blood tests. You get a discount with them and geneva if you quote one of the thyroid websites codes, thyroiduk have details on their site. If you get the fingerprick tests you don't need to worry about getting someone to take your blood, although I can report my sister did it herself (!) No problems after watching a youtube vid on how to DIY. Not for the faint-hearted smile

mercibucket Sun 09-Dec-12 10:12:30

Do you feel ok on 50 with tsh of 5 digerd? If you feel fine, then that is an ok level for you. I felt like death on that level and needed 2 hours sleep in the day, I even felt crap with tsh 2.5. So I guess we are all different. It's the feeling ok that's the important part imo.

For the tests, I can recommend blue horizon and their linked company which does fingerprick blood tests. You get a discount with them and geneva if you quote one of the thyroid websites codes, thyroiduk have details on their site. If you get the fingerprick tests you don't need to worry about getting someone to take your blood, although I can report my sister did it herself (!) No problems after watching a youtube vid on how to DIY. Not for the faint-hearted smile

digerd Sun 09-Dec-12 10:05:47

Thyroid opinions vary. It was known that in certain areas of Germany, where there was a lack of iodine in the water, many people developed "Goitres", which means a swollen Thyroid Gland. Not necessarily causing under or overactivity. I developed a Goitre due to long term Overactivity - Hyper thyroidism. After I had the op to radically reduce it, my UK Endo said taking iodine could cause Hypothyroidism, but german DR prescribed my low dose iodine tablets 10 years later. But I didn't take them as was fine at the time and due to the controversy.
Only 23 years later, did my german dr say myThyroid had become slightly HYPO, not that I noticed any symptoms. He mentioned the number 4, but can't remember if he said it was slightly under or over.
Been on 50 mcg of Levythyroxine since then, and UK GP said that once my TSH was 5.2 which showed a bit underactive, but wasn't worried.

knackeredoutmum Sun 09-Dec-12 09:43:33

Also iv now found a place where i cld hv all the thyroid tests dobe privately even if gp not agreeable

knackeredoutmum Sun 09-Dec-12 08:07:59

Wow that looks like a good website thank you.

I have found the online site for the nhs hospital who will test vit d for £25 and i am going to ring them on monday.

Yesterday i heard from a midwife that they are seeing more and more uk babies born with rickets, so vit d deficiency is on the rise here. Also it is a rare week, especially this time of year, when i have as much sun exposure as you are recommended to get so i def need to test vit d

mercibucket Sat 08-Dec-12 20:25:31

I stumbled across this - no idea if it is from a reputable sites but it provides links to back up its assertions. Interesting about the iodine and a few other ways to reduce tsh
https://sites.google.com/site/miscarriageresearch/thyroid-and-miscarriage/how-to-lower-tsh

mercibucket Fri 07-Dec-12 22:03:34

(Hi RockinD)

Your tsh has been going up, so it's not as if it's always been so high, and the last test was around 6 months ago. If you feel worse than you did 6 months ago, it has probably gone higher again. Well worth another test

GPs are used to patients telling them what they'd like. Up to you, but you won't get good treatment until you start to assert yourself imo. Go and ask for the blood tests, explaining how you feel, and take it from there

mercibucket Fri 07-Dec-12 22:03:32

(Hi RockinD)

Your tsh has been going up, so it's not as if it's always been so high, and the last test was around 6 months ago. If you feel worse than you did 6 months ago, it has probably gone higher again. Well worth another test

GPs are used to patients telling them what they'd like. Up to you, but you won't get good treatment until you start to assert yourself imo. Go and ask for the blood tests, explaining how you feel, and take it from there

HazleNutt Fri 07-Dec-12 21:19:13

As others have said, you need to test for other things besides TSH. However - even though in UK, TSH under 5 is still considered normal, many other countries have set the limit at 3,5 and you would certainly get some thyroxine with 4,8. I personally feel horrible with all hypo symptoms when my TSH goes over 1 and my doctors here in France have no problems giving me enough medication to keep it so.
Could you try to find a doc that treats you based on your symptoms and is not only concerned about the numbers?

fruitscone Fri 07-Dec-12 20:11:17

I don't think you should go down the kelp / iodine supplements route as it could be counterproductive.

There are different kinds of underactive thyroid. Mine is hashimotos thyroiditis, which is an autoimmune disease. I think I am right in saying this is the most common kind. If you test positive for thyroid antibodies, this is indicative of you having autoimmune thyroid disease and might persuade the doc to medicate you for it.

My doc has told me to keep off iodine because it can actually make the autoimmune process more active. I live in Germany where people are obsessed about iodine deficiency and it is really hard to find salt that has not been supplemented with iodine. Plus as a matter of course, pregnant women shovel in the iodine supplements lest their offspring be born with low intelligence. I was told on no accounts to take iodine and in fact to try to avoid it (it is in lots of processed food).

Once you are on thyroid meds, they actually like your TSH to come down to about 1-ish so no wonder you are feeling rough at 4.8. Good luck. I feel so much better now than I did ten years ago when I felt really really knackered.

knackeredoutmum Fri 07-Dec-12 19:06:02

Could my thyroid be 4.8 and it just be low iodine? Or unlikely?

I am in uk but theres no way i feel like i can tell a gp what tests they need to run on me!

I may be able to get them to do tsh and antibodies which i suppose is a start.

RockinD Fri 07-Dec-12 18:09:35

First question is, are you in the UK?

If you are then you need to go back to your GP and ask for the following tests. These can all be done on the NHS - TSH, FT4, FT3, TPO, TgAb, ferritin, Vitamin B12 and folate, Vitamin D. Is that the full list merci?

Only then can a proper diagnosis be made.

In the mean time, add some good quality salt back into your diet and start taking and recording your basal body temperature first thing in the morning, before you get out of bed.

At the moment your TSH is way too high, which suggests that you may well be hypothyroid, but you really need the other tests to get a full picture.

mercibucket Fri 07-Dec-12 14:42:33

If you can afford to test privately then you could get your tsh, t4 and t3 tested for about fifty quid

There is also a supplement to help with thyroid disorders. Uselessly I can't remember what it is called. Some of the supplements actually contain t4 and t3 when tested.

If you go to thyroid uk on their 'health unlocked' forum, someone there will know more about kelp and also the thyroid supplements

Really tho, you need to test for antibodies. If you have high antibodies, your body is attacking the thyroid and it won't just stop

mercibucket Fri 07-Dec-12 14:42:24

If you can afford to test privately then you could get your tsh, t4 and t3 tested for about fifty quid

There is also a supplement to help with thyroid disorders. Uselessly I can't remember what it is called. Some of the supplements actually contain t4 and t3 when tested.

If you go to thyroid uk on their 'health unlocked' forum, someone there will know more about kelp and also the thyroid supplements

Really tho, you need to test for antibodies. If you have high antibodies, your body is attacking the thyroid and it won't just stop

PostBellumBugsy Fri 07-Dec-12 14:36:18

ferritin is a really important test to get done. Lots of women don't store iron well & have low ferritin, which leaves them feeling really awful.

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