Advice please - not sure what's happening with ... - Thyroid UK

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Advice please - not sure what's happening with my test results

Bytheseaside
Bytheseaside

Hello,

I was diagnosed with an underscore thyroid about 4 years ago following a bit of a battle with my GP (another story!). However was eventually prescribed levothyroxine, test results were always a little high from my point of view and although I felt better through taking levo I thought I should feel better than I was feeling.

I've just had results back and was surprised to see how they've changed recently.

In January 18 my results were:

TSH 3.28 (0.27 - 4.2)

Ft4 18.6 (12-22.0)

Before this test I was taking alternate days of 75mcg and 50mcg of levothyroxine, GP increased to 75 mcg daily and retest in April.

April

Tsh 0.06 same range

Ft4 33.2 same range

Doctor recommended I reduce levo to 50mcg daily which I did and retest July.

July

Tsh 28.76 same range

Ft4 14.08 same range

Have I reduced too much? Am thinking parhaps going back to alternate days of 75/50 would have been better, but I've never had readings this high or as low as in April. To me this suggests was underactive, went overactive in April and now underactive again, could this be hashimotos? If it was what else should I look out for? Why would this change so drastically?

Thanks in advance.

23 Replies
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SeasideSusie
SeasideSusieAdministrator

Bytheseaside

Could very well be Hashi's.

You need thyroid antibodies testing - Thyroid Peroxidase and Thyroglobulin.

I've had TPO tests before which were in their hundreds then dropped (several years later) to double figures if I remember correctly, my GP won't test for Thyroglobulin unfortunately, I'm not sure of difference between them. I've just spoken with GP and hadn't read this but will keep it in mind for the retest in a couple of months time. Thanks

SeasideSusie
SeasideSusieAdministrator
in reply to Bytheseaside

Bytheseaside

I've had TPO tests before which were in their hundreds then dropped (several years later) to double figures if I remember correctly, my GP won't test for Thyroglobulin unfortunately

That's all you need to know. Once antibodies are raised no need for further testing, it confirms Hashi's. And as antibodies fluctuate, they can show up as high or low, but it's still Hashi's. As they were raised TPO that's enough to confirm it, if TPO had been negative it would have been worth testing TG but you don't need to.

So the Hashi's is causing the fluctuations with your results, that's the nature of the beast. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. Symptoms may fluctuate too. Adjusting dose at the time can be helpful, then readjusting when the "Hashi's swing" is over.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. You should have the following tested:

Vit D

B12

Folate

Ferritin

Thank you that really makes sense, I'll give the links a look. Interestingly I'm on supplements for vitamin D as that was really low when last tested and I've always struggled to get my Ferritin to a decent level. Thanks again.

shaws
shawsAdministrator

Were the tests always at the very earliest possible? Fasting (you can drink water) and did you allow a gap of 24 hours between last dose and the test and take it afterwards.

Bytheseaside
Bytheseaside
in reply to shaws

Thanks for reply. Yes always had tests around 9.00am (earliest the nurses can do), I always fast before a test, and usually don't take levo until after the test although my most recent test I had swallowed it before I'd remembered!

Just had a call from the GP he's advised alternate days of 75/50 and retest in a couple of months.

shaws
shawsAdministrator
in reply to Bytheseaside

If you took tablets before tests, your results will be skewed. So I would be doubtful to adjust dose according to the results as your GP is suggesting. When you have your next test put tablets in another place the day before the test so you aren't in an automatic pilot phase and take before test. It is so easy to do.

HiddenThis reply has been deleted
Bytheseaside
Bytheseaside
in reply to Hidden

I agree, I think it was too much of a drop. Thanks

I would go back to 75 mcg daily. It looks like you have autoimmune hypothyroidism, antibodies attack the thyroid and can sometimes cause a release of excess hormone although the general trend is for secretion to decline. This may go on for a year or two and you and your doctor will have to try and jiggle your levothyroxine dose. If your levels can't be got under control there is an option called 'block and replace' where you are given medication to block your thyroid from secreting hormone and you are given a full replacement dose of levothyroxine. It would help if your doctor could measure your fT3 as well as fT4 and TSH as your case is a little more difficult.

Thank you, I'm still very much learning about all this, will keep this in mind for my next test.

greygoose
greygoose
in reply to jimh111

That's a treatment for Grave's. It is not appropriate for Hashi's. If the OP's Gp would allow her TSH to be suppressed and keep it there, then that would be a far better option.

jimh111
jimh111
in reply to greygoose

Block and replace is to control irratic thyroid hormone secretion from whatever cause. In any event I'd only go for it after several months as things often settle down in time. Suppressing the TSH may make a patient thyrotoxic and will not affect irratic thyroidal secretion caused by autoimmune attack.

greygoose
greygoose
in reply to jimh111

A suppressed TSH does not make a patient thyrotoxic. It doesn't do anything because it isn't there! How can it stimulate the thyroid if it's not secreted? As long as the FT3 is in-range, the patient cannot be thyrotoxic. On the other hand, if the TSH is not stimulating the thyroid, it won't stimulate the immune system to attack, either. It's gland activity that causes the attacks. Without the attacks, the hormone levels will be more stable.

jimh111
jimh111
in reply to greygoose

greygoose, I'm sorry to contradict you but you clearly do not understand how the thyroid and the hypothalamic pituitary axis works.

TSH has feedback and feedforward roles. Feedforward in that it stimulates the thyroid to secrete thyroid hormones. Feedback in that serum thyroid hormones (T3 and T4) reduce the secretion of TSH by the thyrotrope (in the anterior pituitary). The pituitary takes in T4 and T3, converts the T4 to T3 and these combined sources of T3 bind to receptors that down-regulate thyrotrope activity. Thus, in healthy subjects TSH is an accurate measure of overall serum hormone levels. Whilst T3 is necessary to activate DNA expression many tissues are able to convert T4 to T3 and so both hormones affect metabolism. This is why the pituitary responds to the combined effects of T3 and T4.

TSH, fT3 and fT4 are inter-related. For a given TSH both fT3 and fT4 will be middling, or fT3 high and fT4 low, or fT4 high and fT3 low. This is something endocrinologists often fail to appreciate. They think that if all three hormones are 'in range' all is OK, it is not. The term 'in range' is misleading, the reference intervals are not ranges and certainly not diagnostic ranges. They are a statistical tool that describes two standard deviations from the norm, the middle 95% of values that a presumed healthy population has.

If a healthy subject has an fT3 of say, 5.0 (3.5 - 6.5) then if their fT3 is lowered to 4.0 (whilst keeping fT4 unchanged) they will become hypothyroid. If their fT3 is raised to 6.0 they will become thyrotoxic. Their appropriate fT3 is 5.0 although it does vary in relation to their fT4. Other subjects will be euthyroid with an fT3 of 4.0 or 6.0, individual differences due no doubt to their genetic make up. Thus it is completely wrong to assert someone cannot be thyrotoxic if their fT3 is 'in range' (Tony Toft is also wrong in this respect). It is equally totally wrong to say someone cannot be hypothyroid if their fT3 is 'in range'.

A suppressed TSH does not prevent the release of thyroid hormone if the patient has an autoimmune attack. Indeed it will make it worse as you are rendering the patient thyorotoxic in addition to the thyrotoxicity from the release of excess hormone due to autoimmune attack. If the patient is suffering from occasions of excess hormone putting more hormone into them is not smart.

There is evidence to show that preventing TSH from going high reduces autoimmune activity but once TSH is down to reasonable levels further reductions in TSH do not inhibit autoimmune activity. Autoimmune attacks usually continue until some time after the thyroid has ceased to function. Once the thyroid has lost most of its activity the effects of any residual autoimmunity are of little consequence. If the thyroid is no longer working it isn't going to release T3 or T4.

In practical terms Bytheseaside should see if they can get her hormones to reasonable levels, this will probably involve some ups and downs. If it cannot be brought under control then there is the option to use block and replace in the longer term.

greygoose
greygoose
in reply to jimh111

I understand perfectly understand how the thyroid and the hypothalamic pituitary axis work. Thank you. You're not telling me anything I don't know. However, you're forgetting that we're not talking about 'healthy' people here. And one of the main mistakes doctors make is comparing hypos to healthy people and expecting them to perform the same way.

But, you have in no way explained how your assertion that suppressing the TSH is going to make the patient thyrotoxic, works. I was not suggesting over-medication the patient. That is rarely necessary for most hypos.

A suppressed TSH does not prevent the release of thyroid hormone if the patient has an autoimmune attack.

Of course it doesn't! I never suggested that it did! But I think you'll find that, in practice rather than theory, most people find that suppressing thyroid activity does have an effect on autoimmune activity. But, Bytheseaside's results do not differ in any way to those of other Hashi's sufferers. Yet, I have never seen anyone suggest bloke and replace for that - neither on here, nor anywhere else. Given that drugs such as carbi can have certain side-effects, it would seem to me that they're better avoided rather than handed out to people that don't really need them.

jimh111
jimh111
in reply to greygoose

TSH is a reflection of overall thyroid hormone levels, if it is suppressed it usually indicates the subject is thyrotoxic, but not always. Thus, you cannot make the assertion that a 'in range' TSH will never be thyrotoxic. It will be thyrotoxic in most cases but not all and many of the exceptions join these forums. I've suggested block and replace many times, but only if irratic thyroid output cannot be controlled or tolerated. If the thyroid cannot be brought under control and is causing symptoms the options left are block and replace, thyroidectomy or radioiodine. Hence my preference for block and replace, but only if needed.

greygoose
greygoose
in reply to jimh111

In a euthyroid person a suppressed TSH usually indicates thyrotoxicity, be we are talking about people with Hashi's. And I did not make the assertion that a TSH in-range will never be thyrotoxic. I didn't say anything of the sort. Please read what I've said before trying to contradict me!

As for block and replace, I fail to see how that is going to help during an autoimmune attack. Hormones are still going to be dumped into the blood and raise the FT4/3. So levels will still not be stable.

jimh111
jimh111
in reply to greygoose

Sorry, that was a typo, my sentence should have read:-

Thus, you cannot make the assertion that a suppressed TSH will never be thyrotoxic. It was in response to your statement 'A suppressed TSH does not make a patient thyrotoxic'.

Someone with a suppressed TSH, healthy or patient, will usually be thyrotoxic but not always. Provided the hypothalamic pituitary thyroid axis is functioning normally TSH reflects serum thyroid hormone levels, regardless of where the hormones came from be it from a healthy thyroid, a diseased thyroid or tablets. If the TSH is suppressed it indicates abnormally high hormone levels which in most cases is thyrotoxicity.

Asserting that a very low TSH is always harmful or that a suppressed TSH doesn't matter are two sides of the same coin.

greygoose
greygoose
in reply to jimh111

I stand by what I said because I didn't say that a suppressed TSH never meant you were thyrotoxic, I said it didn't automatically mean that you were thyrotoxic. As you so well know, we cannot go by TSH alone. You are the one that said a suppressed TSH would make the patient thyrotoxic! I said it can't make the patient thyrotoxic, meaning that it's suppressed when the patient is already thyrotoxic, it doesn't make the patient that way. Was the word 'make' also a typo?

If the TSH is suppressed it indicates abnormally high hormone levels which in most cases is thyrotoxicity.

No, not necessarily. We see it here, all the time, people with suppressed TSH whose Frees aren't high enough to make them well.

Asserting that a very low TSH is always harmful or that a suppressed TSH doesn't matter are two sides of the same coin.

I have no idea what you're getting at there.

And you still don't explain how block and replace is supposed to help with autoimmune attacks - unless, of course, you're saying that lack of thyroid activity means lack of immune activity...

greygoose
greygoose
in reply to greygoose

Bytheseaside , please excuse these exchanges taking over your thread. I'm sure they're not of much interest to you. So, I shall not be adding anything more to the discussion. We'll leave it at that. :)

jimh111
jimh111
in reply to greygoose

There's been a great deal of confusion. 'I said it can't make the patient thyrotoxic, meaning that it's suppressed when the patient is already thyrotoxic'. I'd agree fully with this assertion. It is advisable to avoid thyrotoxicity whether it is caused by an out of control thyroid or taking too much hormone. (with the caveat that some patients need high hormone doses that suppress the TSH).

'most cases' 'No, not necessarily' - we're saying the same thing!

My reference to two sides of the same coin is pointing out that assertions that a suppressed TSH is always bad or can be ignored are both dogmas that are not based on evidence. There has to be careful analysis and judgement.

Block and replace can prevent the wide swings in hormone levels that sometimes occur in autoimmune thyroiditis. Drugs such as carbimazole suppress the production of hormone in the thyroid so even if it is attacked it can't pump out loads of hormone. The patient can then be given hormone supplementation and achieve stable hormone levels, no more swinging from hypo to hyper. I'd rather try and tough it out for a few months but if I couldn't get hormone levels under control I would opt for block and replace. It's better than the alternatives of thyroidectomy and radioiodine ablation.

greygoose
greygoose
in reply to jimh111

Just to say that there is plenty of evidence that a suppressed TSH can be ignored, plenty of papers posted on here. And that I would never opt for block and replace, but nor thyroidectomy or RAI. Eventually, the thyroid is destroyed, anyway, why risk the op. But, each to his own, of course. And I have no intention of discussing it further, I've made my point.

Have a nice day.

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