Thyroid UK
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All results in one thread - suggest under medicated or poor conversion & could this be cause of peripheral neuropathy

Hello everyone

Thank you for all your most helpful messages last night. They all make perfect sense. I just wish the doctors knew as much as you all clearly do.

The one thing that has come up a few times is why I’m a poor converter T4 to FT3? As it doesn’t look like a dietary or vitamin issue. Could it just be that the thyroid has been under medicated for so long that it’s not able to do what it’s supposed to do?

I haven’t had the antibody results for Hashimoto but have everything else I’d be grateful for your expert opinions on:

Coeliac 1.92 g/l (0.8-4)

HbA1c 41 mmol/L (42-47 means high risk of diabetes )

Fasting glucose 5.7 mmol/L (2.6-6.0)

Calcium 2.46

Adjusted calcium 2.44 mmol/L (2.2-2.6)

Folate 9.8 (4.6-18.7 ug/L )

B12 867 ng/L (180-700) I take B complex 2-3 per week but definitely not daily

Iron 24 umol/L 24 (7-26)

Transferrin 2.93 g/L (2.0-3.6)

Transferrin saturation 33% (15-50)

Ferritin 202 ug/L (15-300)

25 OH Vit D 104 nmol/L ( >50 and > 300 can be toxic)

FT3 3.9 pmol/L 3.2-6.8

FT4 22.4 pmol/L 12-22

TSH 3.94 mU/L 0.27-4.2

I take 75mcg daily

The only thing I haven’t added is my inside leg measurement! lol

Sorry for the long post but I know many of you experts look at the whole picture (rightly so)- still waiting on antibody result which I will get next week hopefully

I have given the Dr Toft article to both GPs I’ve seen in last week - hope they read and take heed

I am seeing my GP on Monday - he was good enough to do all these tests but he doesn’t seem to think T3 is the important factor

Any further thoughts or advice on how I should proceed?

I am so very grateful to you all for the valuable insights you have already provided - you have kept me sane(ish) this week

Xx

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healthunlocked.com/thyroidu...

I think most of the answers are in your last thread - link above. You are under-medicated and could benefit from adding some T3 - seems the general opinion in your previous post.

i think greygoose explained how VERY important the FT3 result is as it is the ACTIVE hormone and needed in every cell of your body. When the result is low there is not enough to around all the cells and things begin to go wrong. It's like trying to spread a teaspoon of butter onto a loaf of bread ! We await the anti-bodies result :-)

If you are on a PC then look to the RIGHT of this page and at the heading RELATED POSTS where there are 10 similar to yours about PN. If you are on a phone then scroll down and down for the same heading ! Maybe a few snippets of helpful information there ...

Of course GP does not understand that T3 is important - they neither understand it nor are they allowed to prescribe - their hands are tied.

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Thank you Marz. Let’s see if I can persuade the GP. I will keep you posted.

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You might want to look into vitamin B6 which will be part of your B Complex. Too much and too little B6 can cause peripheral neuropathy. But I can't tell you whether this is relevant to you.

Anecdote : I had peripheral neuropathy and took a high dose B Complex for quite a while. It helped enormously. Then after a while my neuropathy started coming back again. I found out about the effect of excessive B6 and stopped my B Complex for a while. My neuropathy disappeared again. After I'd stopped my B Complex for a while (three months or so? can't really remember) I started again on a substantially lower dose. I haven't had neuropathy problems since then.

At the time I was doing the above experiments with B Complex I wasn't doing any private testing at all, so it was all done on the basis of how I felt. I have no idea what I was doing to my B12 and folate levels with the chopping and changing.

I'm sure there must be lots of other reasons why you are suffering neuropathy. Low levels of Free T3 will definitely have an impact.

Your HbA1c is quite high and so is your fasting glucose - you are just on the cusp of being declared pre-diabetic. To be diagnosed with diabetes your HbA1c would have to rise to 49 or over.Have you considered trying a low carb, high fat diet?

Some links I like on the subject :

dietdoctor.com/

diabetes.co.uk/

diabetes.co.uk/forum/

lowcarbprogram.com/

Good luck. :)

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Thank you Humanbean your personal clinical trial of B complex is v interesting. I take mine a couple of times per week but dose of B6 is high. Which brand did you find that was not such a high dose?

Thank you for your wise words about pre diabetes. I was thinking along the same lines. I’m going to look into this. I do have a sweet tooth & avoid savoury snacks as my cholesterol is a tad high (but HDL high so not all bad).

I think you are right about different reasons for the PN but low T3 won’t be helping. I will share another theory in my reply to a post from last night.

Thanks again

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Could it just be that the thyroid has been under medicated for so long that it’s not able to do what it’s supposed to do?

No, that's not it at all. What you are taking is thyroid hormone replacement, replacing the hormones your thyroid can no-longer make. It is not a treatment for the thyroid, to make it better. It doesn't have any effect on the thyroid itself.

Your thyroid is failing, for reasons unknown, I believe. On top of that problem, you have the problem of not being able to convert very well - two different problems.

There are many, many reasons for poor conversion, it's not just a question of diet or vitamins. Many people never find out why they can't convert. If you do turn out to have Hashi's, then it could be just that that is affecting your conversion, and there's nothing you can do about it.

But your doctor is so very, very wrong. Probably all your health problems come from that low FT3. And the only thing you can do about it is to procure some T3 to take with a reduced dose of levo. T3 is THE most important hormone. But, doctors are ignorant, so take anything he says with a pinch of salt, and ask us! :)

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Thank you as always Greygoose you are such a great source of knowledge.

Last night you said something that got me thinking. Why can I not convert to T3? Infection? When I saw the neurologist yesterday he asked me about tick bite & I did show him what I thought was a scab from an I growing hair but he was quite suspicious. He took some bloods for Lyme disease antibodies.

So as you and others have said it could be more than one thing going on here.

I’m a bit worried as I’ve had the scabby lesion for about 8 months but tick bite never occurred to me.

I will know more next week & will probably need a lumbar puncture.

It’s getting scarier by the day but hopefully closer to finding out why my arms ache & tingle & why I can’t sleep etc. Fingers crossed it’s not too late to be cured if it is Lyme disease.

Thanks for your supportive and educational messages.

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Lyme testing is tricky I have read. Hope all goes well for you ...

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In what way is it tricky Marz ? Thx

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Because they rarely do adequate testing in the UK. Some people have their samples sent to Germany. It often comes back with false negatives. Check out the work of Dr Neil Nathan in the US. Have you done any research about Lyme ? I hesitated to post a link that appeared in my Inbox today - so as you have asked I am now posting it :-)

lymedisease.org/anthropolog...

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Oh god that’s scary. I feel depressed just like that guy in the article. I hate feeling like this. But the weakness in my arms is getting worse.

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I was only trying to illustrate the difficulties in diagnosing - and did not want to scare you - that is his journey - yours could be so different and it may not even be Lyme.

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I know Marz but when you feel awful & know it could’ be thyroid or Lyme or both it’s frightening.

I just want to know & then heal with whatever treatment there is.

It’s just been going on for so long

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Totally understand having battled illness all my life - 13 operations - mis-diagnosis after mis-diagnosis and only when I retired did I have the time and energy to persue wellness. You can read my journey by clicking onto my username above - as you can others - if they have completed their Bio 😊

You are continuing to persue various scenarios - so hopefully you will have answers soon ...

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FreeT3 is very very important ...every cell in your body functions on T3 not T4

You clearly have a very low T3 and a very high t4 so things are well out of whack ...the high t4 means its sloshing round your body making yo toxic because you cant convert it

Maybe you have the DIO2 gene

Either way you need T3 rather than Levo T4

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Thank you for your reply. What is the DIO2 gene? Thx

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Information on the main website of this Forum - thyroiduk.org

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DIO2 gene is when your body lacks the ability to convert T4 into T3

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Any inflammation causes poor conversion of T4 to T3 and increases conversion to rT3, which slows metabolism.

Lyme disease is a cause of major inflammation. I often wonder if the fatigue of Lyme disease is actually because of lowered fT3 and increased rT3.

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My first diabetes sign was neuropathy, WAY before blood tests showed that I was diabetic. It took another 4 to 5 years and 4 glucose tolerance tests before I was finally diagnosed. Each year that I had the tolerance test my insulin levels were approx doubled from the year before. I failed the last tolerance test with high glucose and high insulin. You have likely had high post prandial (meal) glucose for a number of years already based on your fasting glucose and HBA1C. Be careful with T3 if you are diabetic or pre-diabetic. It can push your glucose higher. Try a low carb diet, it may help reduce your neuropathy, my feet still burn and tingle (after eating) but I am no longer numb.

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Wow Kalicocat this is interesting. Did you have any of the risk factors for diabetes (eg family history, exercise , weight etc)? What were the neuropathy symptoms like? & where eg toes & fingers or top & underside of Feet or hands or legs or arms ? Can you describe them from the beginning to diagnosis ?

I have cut out the biscuits ( I have a weakness for biscuits or cake - daily habit with an afternoon cup of tea!) & cutting white carbs. Maybe I need to do more.

V interesting to hear about T3 & sugar. Thank you v much.

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