Thyroid problems ruled out?: Over past year I... - Thyroid UK

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Thyroid problems ruled out?

Sleepybunny profile image
24 Replies

Over past year I have had tests for TPO Ab and TG Ab, both tests came back negative,

Can I be sure that I am definitely not hypothyroid? TSH when last measured was about 2 and the highest it has been is about 4. T3 and T4 when measured a few years ago were normal range. My TSH levels dropped when I started taking B12, i usually post on PA forum.

Thanks for your help.

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Sleepybunny profile image
Sleepybunny
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24 Replies
greygoose profile image
greygoose

First of all, you don't have to have antibodies to be hypo. Hashi's is just one cause of hypothyroidism.

Secondly, you cannot rule out Hashi's on the basis of one negative test, because antibodies fluctuate.

Thirdly, a TSH of 4 is hypo, and 2 shows your thyroid is struggling. The TSH is highest early in the morning, and drops throughout the day. It also drops after eating. So, unless the two tests were done under exactly the same circumstances, you cannot compare them and draw any conclusions.

Fourthly, Frees 'in range' means nothing. It's where in the range they fall. You can still be hypo even if they are both in-range. Plus, you could be having problems converting your T4 to T3, so the FT4 could be perfect, but the FT3 too low to make you well. Do you have the actual numbers?

So, I would say, no, you can't rule out thyroid.

SnodgrassJSA profile image
SnodgrassJSA in reply togreygoose

Does any one know what the optimum levels of all three components should be. My tsh levels over my last three tests have varied between 4.2, 2.6 currently 1.3 ( t4 21mul) is this normal, as I'm struggling to breath and completely at a point of exhaustion

greygoose profile image
greygoose in reply toSnodgrassJSA

Once you are on thyroid hormone replacement, the TSH is irrelevant unless it is high. Yours has always been high, except for the 1.3 - and even that might be too high for you.

The FT4 is a better indication of how well you're doing. But, better still is the FT3 - if you can get it tested. And, the optimum level is the one that makes you well. Not a number on a lab sheet. There is no one optimal level for everyone, because we're all so different. However, most people need their Frees up near the top of the range to feel well.

SnodgrassJSA profile image
SnodgrassJSA in reply toSnodgrassJSA

Thank you, wondering now if I should actually be on 100 microns daily. Something is making me feel really ill.

humanbean profile image
humanbean in reply toSnodgrassJSA

You could be hypo, as greygoose said. You could also be suffering from nutrient deficiencies. Low iron makes people very breathless. So does low B12. Any low nutrient can make people feel diabolical.

Anyone who is hypo is almost guaranteed to have some low nutrients (unless they test and supplement) because of the way being hypothyroid affects stomach acid and reduces the body's ability to extract vitamins and minerals from food.

Have you had other nutrients checked, eg ferritin? If the TSH dropped when you started on B12 it is possible it was struggling due to nutrient deficiencies. For example, people with anorexia can have tsh of 4 because of the lack of nutrients, with no antibodies, and it returns to normal if they eat properly.

Marz profile image
Marz

As others have said you need the FT4 and FT3 results with ranges. Over the last 10 years I have seen so many thyroid results ( we keep our own records here in Crete ) where the TSH is reasonable in the range - the FT4 too - but the FT3 is on the floor. T3 is the most active thyroid hormone and is needed in every cell of the body. The T4 the thyroid produces is a storage hormone only and has to convert into T3. It could be there is a conversion issue caused by many things. Low T3 syndrome is being more and more recognised too .....

Sleepybunny profile image
Sleepybunny

Hi,

Thanks for all the replies. I don't really know what to do as I have run out of money for private tests and there is no way the NHS will consider the possibility of me being hypothyroid with TSH levels of around 2. I think most of my thyroid tests have not been carried out under optimal conditions eg early morning/fasting.

I feel that all I can do is to try to optimise my thyroid function by diet/good nutrition....does anyone know of a good book or links about this? I would not consider self treatment unless I have a confirmed diagnosis of hypothyroidism.

4 years ago

Free T4 16.5pmol/L (10 – 24.5)

Free T3 5 pmol/L (3.9 – 6.7)

I do not have confirmed PA but have B12 deficiency symptoms which are not diet related. Some neuro symptoms disappeared when I started to self treat. NHS has finally agreed I need treatment.

I've had 20 years of being exhausted and wonder if I'll ever feel "with it" again.

greygoose profile image
greygoose in reply toSleepybunny

Have you never had your antibodies tested for PA? They should at least do that!

As for 'optimising my thyroid function by diet/good nutrition' I very much doubt that that is possible. What makes you think that lack of good nutrition is to blame for your low thyroid? Do not, whatever you do, be tempted to take supplementary iodine - which so many people automatically think is the 'cure' for all things thyroid - it isn't! And could make things a thousand times worse.

Obviously you need to eat a good, clean diet - plenty of protein and good fats, fresh fruit and veg, no processed food - absolutely no unfermented soy! - and don't skimp on the salt. But, there's no guarantee that that is going to improve your thyroid.

Just keep testing intermittently to see if anything changes in the results.

humanbean profile image
humanbean in reply toSleepybunny

If you can persuade your doctors to do testing on the NHS, ask for ferritin (better still would be asking for an iron panel) and vitamin D to be tested.

I'm assuming because of your history that there is no point in testing B12 and folate because you are already treated for B12 deficiency.

Once you have any results get a copy of them including the reference ranges, then post a new post on here and ask for feedback.

Sleepybunny profile image
Sleepybunny in reply tohumanbean

Hi,

Ferritin when tested last year was in the 50s (range 10 - 300 ug).

humanbean profile image
humanbean in reply toSleepybunny

With that reference range it needs to be about 150 (approx half way through the range), so you have a long way to go! Have you ever supplemented iron?

Sleepybunny profile image
Sleepybunny in reply tohumanbean

Yes, I take the RDA of iron each day.

I'm reluctant to supplement further as concerned about the risk of iron overload.

humanbean profile image
humanbean in reply toSleepybunny

The RDA of iron is about 14mg if I remember correctly.

When I was taking prescription strength iron (1 tablet, 3 times a day, ferrous fumarate 210mg) I was dosing with 207mg of pure iron per day. It still took me nearly two years to get my levels up to optimal.

Obviously my poor reaction to iron is a little extreme, and most people probably get their levels up a lot more quickly. I was testing regularly to check I wasn't overdoing it.

I think your caution with iron may be a little excessive though...

Marz profile image
Marz

thyroiduk.org.uk/tuk/about_...

Hi Sleepybunny

Take a look at the above link and see how many boxes you tick :-) Perhaps you have already done that. Thyroid UK features on the NHS Choices website - so perhaps mention that to your GP in the hope that he/she will take the old fashioned approach and go by symptoms and allow you a trial of T4 to see if it improves matters. Up until the early 70's that was how it was done as Thyroid Testing did not exist.

It seems to me that today's Docs need reminding of this fact :-)

Sleepybunny profile image
Sleepybunny

Thanks again for your replies and for the warning about iodine as I was considering adding iodised salt to my diet.

Marz, I can currently tick between 25 and 28 on that Thyroid UK list, spread across most sections. Before starting to take B12, I could have ticked about 60 so I strongly suspect I am hypothyroid but that taking b12 has improved my thyroid function.

I remember telling an endocrinologist that I thought I was hypothyroid and B12 deficient which she disagreed with as TSH, T3 and T4 normal range. I also have told several other consultants I saw that I suspected hypothyroidism and B12 deficiency...only one neuro showed any real interest. Several relatives with auto-immune conditions although none diagnosed with hypothyroidism

Don't think there is any way GP will consider a trial of thyroid treatment and I'm reluctant to contemplate it without a confirmed diagnosis. I had to collect a lot of evidence to finally persuade them to consider B12 treatment.

Perhaps they should have done that several years ago when I was losing hair (although not bald) allover especially intimate areas and eyelashes., depression, IBS, bloating, feeling weak., tinnitus, migraines, feeling icy cold....I could go on and on. I suspect that some of the medics thought i was making it all up as they found it difficult to believe that someone could have that many symptoms.

Greygoose, I have had IFA (Intrinsic Factor Antibody) test but it was negative. I suspect I may have Antibody negative PA as mentioned in BCSH Cobalamin and Folate Guidelines.

Marz profile image
Marz in reply toSleepybunny

Just picked up your reply by chance :-) Do you have copies of the thyroid results for the TSH - FT4 and FT3 that were allegedly within the normal range. It is where they are in the range that is critical for diagnosis. Also the Thyroid anti-bodies need testing - anti-TPO and Anti-Tg.

Happy to help where possible ....

Sleepybunny profile image
Sleepybunny in reply toMarz

4 years ago

TSH 4.0 (0.2 – 5.5)

Free T4 16.5pmol/L (10 – 24.5)

Free T3 5 pmol/L (3.9 – 6.7)

3 years ago

TSH 2.3

Free T4 16.5

2 years ago

TSH 3

1 year ago

TSH 2

Thanks Marz and everyone else who replied.

Marz profile image
Marz in reply toSleepybunny

Good that your TSH is coming down and as you say it could be to do with your B12. Did you have all the tests done at the same time and fasting for 24 hours ? TSH goes up and down and is influenced by food and the time of day - hence it is not a good guide.

Four years ago you were certainly hurtling towards being Hypo.

I would still have those pesky anti-bodies tested - just in case. I was tested here in Crete in 2005 - TSH - FT4 - FT3 were all in range - however the anti-bodies were quite high. GP started me on Levo/T4 in order to support the thyroid whilst under attack from the anti-bodies. Her quote - not mine.

Kinda made sense - and so my journey started :-)

Sleepybunny profile image
Sleepybunny in reply toMarz

Hi,

Can't remember all the details, certainly didn't fast for 24 Hours...

This year TgAb and TPOab came back negative but didn't fast beforehand.

I guess when money improves I'll get a full thyroid panel after fasting. Is it enough to fast overnight?

Marz profile image
Marz in reply toSleepybunny

Fasting overnight is fine. Don't think fasting affects the Anti-bodies - just the TSH.

Amazing how the symptoms of B12D and Thyroid overlap. Many moons ago I did a post on here - B12D and Thyroid - Chicken or Egg ?

The body is a complex machine .....

greygoose profile image
greygoose in reply toSleepybunny

As antibodies fluctuate massively, you cannot rule out Hashi's with just one negative test. Also, there are two types of antibodies for Hashi's : TPOab and TgAB. Did you have them both tested? Or just the TPO?

Sleepybunny profile image
Sleepybunny in reply togreygoose

Hi both tested, both negative.

greygoose profile image
greygoose in reply toSleepybunny

OK, but, as I said, one negative test does not a Hashi's free person make!

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