TSH risen suddenly : Hi Following on from my... - Thyroid UK

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TSH risen suddenly

Dolphin40 profile image
Dolphin40

Hi

Following on from my previous post - My 7 year old daughter who was diagnosed with Hashimotos over a year ago has had a TSH of around 6 for the past 7 months (Endos wouldn’t increase due to SVT). It was gradually going down as well as her TPOs when we tested her 5 weeks ago.....

Having tested her yesterday her TSH is now at 14 and her TPO’s have gone up again. Nothing has changed in the past 5 weeks im aware of.

1. Im just wondering - FLARES - do these mean a temporary increase in TSH and reduction in ft levels therefore you should hold off on increasing thyroxine?

2. She started some new tinctures (eg for strep infections, parasites and a vitamin b complex, vitamin C) for possible root causes a few weeks ago. They are taken 30 mins away from her thyroxine and mainly much later in the day. However could this protocol have inpacted her levels?

Many thanks

58 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Dolphin40

We always advise taking any supplements or medication 2 hours away from thyroid meds so that they don't affect the absorption of the thyroid meds (some need 4 huors).

The B Complex should be left off for 7 days before any blood tests as it contains Biotin and this can give false results when Biotin is used in the testing procedure (which most labs do).

I know, there is no biotin in it plus her levels went down not up x

helvella profile image
helvellaAdministrator in reply to Dolphin40

The effect of biotin on a test result would not always be up rather than down! It is more complex than that.

Obviously, if there is no biotin involvement, this is not relevant but wanted to make the point for anyone else following later.

Dolphin40 profile image
Dolphin40 in reply to helvella

Ok thanks. Yes there is none in her b complex

Dolphin40 profile image
Dolphin40 in reply to helvella

Are you able to provide any insight into my question pls? Thank you x

Dolphin40 profile image
Dolphin40 in reply to helvella

Am I right in thinking its you that is very knowledgeable on assay interference which was in my previous post? Id really appreciate your input if so x

helvella profile image
helvellaAdministrator in reply to Dolphin40

I held off from saying more partly because jimh111 has responded appropriately and also because there is no test result other than TSH.

If TSH goes up markedly without any other apparent reason, things like antibodies to TSH itself should be considered. If they are present, they combine with TSH to form something called macro-TSH. Trouble is, macro-TSH looks like higher levels of TSH on many assays.

Some assays are affected by macro-TSH; others not. Was the test done in the same lab?

Was the blood draw at the same time of day? And similar time from last dose?

Dolphin40 profile image
Dolphin40 in reply to helvella

Her TSH is fine with no antibodies. Its the Ft4/3 where antibodies have been found but they clearly don’t understand it as they can’t explain it properly to me. Also, they won’t do this test again so il never know her true t4/3 levels or whether they have even gone back to being accurate without antibodies? I don’t know how to therefore assess her levels properly?

helvella profile image
helvellaAdministrator in reply to Dolphin40

I'm a little confused here.

Has she been tested for all of these:

TSH antibodies?

T4 antibodies?

T3 antibodies?

Thyroid peroxidase antibodies?

Thyroglobulin antibodies?

Dolphin40 profile image
Dolphin40 in reply to helvella

Yes to all.

She was having random levels when she started taking thyroxine a year ago. Her TSH, FT4/3 were all high. Therefore GOSH referred to Addenbrooke’s to check for assay interference- they concluded her TSH readings are correct but her T4/3 levels are not and have assay interference.

This is my first concern - the other is a recent random increase her TSH x

Dolphin40 profile image
Dolphin40 in reply to helvella

Her TSH went up 9 points and her T4/3 came down about 6 (though we obviously don’t know correct numbers)

Just wondering why this can happen after being steady for so long? Its not a gradual increase but gone from 5-14 in 5 weeks

helvella profile image
helvellaAdministrator in reply to Dolphin40

Has the make, or even batch, of the levothyroxine changed?

Just what are the tinctures being taken? Do you have a full list of ingredients?

Dolphin40 profile image
Dolphin40 in reply to helvella

Nothing has changed.

Its for strep support/ parasites

Its only been 3 weeks - Can your TSH and antibodies respond that quickly to a trigger?

helvella profile image
helvellaAdministrator in reply to Dolphin40

Antibodies can change within hours if there is reason for them to do so. Similarly, TSH.

What takes a long time with TSH is stabilisation after, say, a change in dosing. TSH also changes significantly within the day. After being hypothyroid with extremely high TSH, the level will usually start to change very quickly indeed. But it can be months before it finally stabilises. During that period, even having slightly too little thyroid hormone can see TSH rise far faster and further than it would in someone who had never previously had a thyroid issue.

Dolphin40 profile image
Dolphin40 in reply to helvella

I was advised Antibodies have a half life of 3 weeks, so it would take about 4 months for any significant change to show up - the effects are not that immediate. I thought this was incorrect but it was a functional practitioner who told me this?

helvella profile image
helvellaAdministrator in reply to Dolphin40

I don't get how a half-life of 3 weeks would translate to a four month delay in there being any significant change? But that is probably my ignorance.

With a new virus, it can take three weeks for the antibody response to maximise. But if the same antigen re-infects, maximum response can be as short as one week.

But, with autoimmunity we are dealing with a very different situation.

Dolphin40 profile image
Dolphin40 in reply to helvella

Its so complicated

jimh111 profile image
jimh111 in reply to helvella

To some extent we can only trust Addenbrooke's have checked that the assays are giving correct results that are not overly affected by assay interference. We are not experts on the biochemistry. It might be worthwhile putting in a request for copies of all her blood test results and medical notes to Addenbrooke's (not GOSH), this will enable you to figure out what they have actually checked and the results.

She seems to show signs of hyper and hypo thyroidism which would tend to rule out Graves' or atnibodies stimulating the pituitary to produce too much TSH and hence extra T3, T4. At the risk of being a pain I would emphasise the need to be methodical starting with ensuring Addenbrooke's carry out testing for RTH, which I know you are following up.

Dolphin40 profile image
Dolphin40 in reply to jimh111

Thank you.

Addenbrooke’s tested the same blood sample as GOSH (TSH/T4/T3) They used 5 different assays and concluded TSH is correct but FT4/FT3 is not due to antibody interference.

GOSH just emailed me and said there were no abnormalities in the generic testing so i guess that means no RTH issues? I have requested a copy of the results.

My guess is the mycotoxins/Lymes or Co infections is affecting her thyroid levels and therefore readings and her TSH may be responding normally to that? However her levels have never been that low (14) is what Addenbrooke’s found for her Ft4 and she was on 25mcg. Shes on 37.5 now

jimh111 profile image
jimh111 in reply to Dolphin40

"concluded TSH is correct but FT4/FT3 is not due to antibody interference" not sure what this means, it seems to suggest TSH, fT3 and fT4 are all giving the correct results.

Be interesting to see the genetic testing results but be aware that only 80% of RTH cases show a genetic mutation, 20% do not have a mutation but the diagnosis is still valid. The Addenbrooke's team would need to investigate, they measure other blood variables and things like oxygen consumption.

Dolphin40 profile image
Dolphin40 in reply to jimh111

Sorry if im not being clear- TSH reads right when blood is taken but Free levels do not due to assay interference

jimh111 profile image
jimh111 in reply to Dolphin40

In which case as far as blood tests go they should follow TSH and ignore fT3 and fT4. They should also be able to tell you which assay works. If you get hold of the case notes from Addenbrooke’s it will probably have this information, so you won’t need to ask.

Dolphin40 profile image
Dolphin40 in reply to jimh111

This is all I was given

jimh111 profile image
jimh111 in reply to Dolphin40

I don't have knowledge of these assays so can only make general comments. It seems that the TSH results are correct. They say there is no assay interference with the TSH or free T4 but interference is likely in the free T3 and (total) T4 assays (we don't usually use total T4). The GOSH and Addenbrooke's assays show free T4 between the mid-point and upper limit of the reference interval. They differ in the free T3 results GOSH has it very high and Addenbrooke's mid interval.

I'm out of my depth on the subject of blood testing, possibly diogenes could comment.

Genetic RTH caused by mutations of the TRB gene present with elevated free thyroid hormone levels and a non-suppressed TSH. This is consistent with your young daughter's results except that her thyroid is struggling to secrete hormone. A genetic mutation is only found in about 80% of cases, the rest are diagnosed on the basis of signs and symptoms. These include cholesterol level which is elevated in your daughter's case. I'd try asking Addenbrooke's to investigate RTH so that it can be ruled out (not just the genetic mutation test). Her case is so complex and she is so ill I think they need to invest the effort and methodically rule out each option. I should declare some personal bias, I am very much opposed to dithering in medicine, so maybe I take a more assetive approach than normal.

Dolphin40 profile image
Dolphin40 in reply to jimh111

Thanks so much

Dolphin40 profile image
Dolphin40 in reply to jimh111

Iv sent emails to a few people at Addenbrooke’s and not getting a reply. Do you have any contact details I could try please? Thank you

jimh111 profile image
jimh111 in reply to Dolphin40

The Addenbrooke's thyroid team only accept referrals from endocrinologists so I suspect they will not reply. I'm currently not getting replies from an endocrinologist who is supposed to be on my case so it may be a common thing.

Dolphin40 profile image
Dolphin40 in reply to jimh111

Terrible 😞

An autoimmune flare up would secrete extra hormone pushing up fT3, fT4 and lowering TSH. However, if this is happening you will get fluctuating hormone levels so it will look much the same.

If she does have RTH it will put stress on the thyroid to secrete high levels of hormone and if I remember correctly (long time since I read it) this can increase the likelyhood of autoimmune thyroiditis. As noted earlier best to keep all supplements well away from thyroid medication. Have these strep infections, parasites etc. been diagnosed? I would avoid all unnecessary medication.

Dolphin40 profile image
Dolphin40 in reply to jimh111

By private testing - yes

But her levels haven’t gone up and TSH come down. Her TSH has suddenly gone up a lot and tlevels down?

jimh111 profile image
jimh111 in reply to Dolphin40

Yes but the prior status of lower TSH and higher fT3, fT4 could have been from a gentle flare up and now that flare up has ceased. Autoimmune thyroditis can lead to unstable thyroid hormone levels. My guess is that this is an effect rather than a cause. i.e. her underlying problem is not autoimmune hypothyroidism, if it were she would not have elevated TSH and elevated fT3, fT4.

Dolphin40 profile image
Dolphin40 in reply to jimh111

Thats the thing though, her t4 and t3 are not elevated. It was the assay interference causing incorrect high readings? Thats what Addenbrooke’s and GOSH say?

jimh111 profile image
jimh111 in reply to Dolphin40

See my previous comment, I'm not sure if you are saying there was antibody interference. If there was do they know her 'true' fT3, fT4? If not it seems reasonable to go by TSH provided it doesn't accelerate her heart rate.

Dolphin40 profile image
Dolphin40 in reply to jimh111

Yes its above ..... 14 for ft4 and 5.2 for ft3 - this was on 25mcg but shes on 37.5 now and they won’t run all those tests again so I don’t know what her true levels are now or i won’t know going forward 😬

Dolphin40 profile image
Dolphin40 in reply to jimh111

Would you still treat with thyroxine though if it is an effect and not cause? And does it mean, remission is possible if we can find the cause?

jimh111 profile image
jimh111 in reply to Dolphin40

IF she has RTH and as a consequence her thyroid was stressed and developed thyroiditis they would still treat with levothyroxine to restore clinical euthyroidism. To achieve this they would need to monitor her signs and symptoms as well as some blood variables such as cholesterol and SHBG which reflect thyroid hormone activity.

This, it is important to find the underlying problem.

Dolphin40 profile image
Dolphin40 in reply to jimh111

She has high cholesterol

SVT = Supraventricular tachycardia

I got tachycardia from low iron. Improving my iron reduced the severity of the condition, although having been triggered I've never managed to get it to stop completely.

Tachycardia can also arise from B12 and/or folate deficiency.

However, tachycardia is not one single condition - there are several different types, so my comments may be irrelevant to your daughter. But I still think her nutrient levels should be tested, and optimised if necessary.

Dolphin40 profile image
Dolphin40 in reply to humanbean

Yes have done all this and she on the vitamin ms/minerals she is deficient in x

So sorry, that's really hard on you and your child. Is she having her T4 and T3 level checked, is she on thyroid replacement? I had the same thing as your daughter, diagnosed at 7. I was not treated and almost died at 32 from myxoedema coma caused by untreated hypothyroidism.

Oh god. Im sorry!

Yes t levels being checked too.

Shes on thyroxine 37.5 but i think she’s been reacting badly to it over this past year. Shes lost 3/4 of her hair 3 weeks into starting it x

did you start on the liquid thyroxine yet ? (or have i confused you with somebody else )

No. They have only just agreed to switch but im trying to get Tirosint- Sol x

tattybogle profile image
tattybogle in reply to Dolphin40

oh well that's my only idea for why tSH has gone wonky again out of the window :)

Having said that .. tincture for ridding of parasites etc .. presumably if they do contain anything effective enough to kill parasites they will be having an interesting effect on the gut conditions.. and gut conditions surely effect everything else in the body.. so that would be the next 'culprit' i looked at as cause for sudden change in TSH levels .

but if they are needed and effective . maybe it doesn't matter that TSH has gone up for now .. just finish the course ? of them and then wait a bit to see what TSH says after few weeks without them.

Dolphin40 profile image
Dolphin40 in reply to tattybogle

Sounds like a plan 😉

Just in case you're interested ...I noticed a reply to this post .. healthunlocked.com/thyroidu... there is a bit on childhood Hypothyroidism in the seminar.. I haven't listened so don't know if its any good.

Thank you x

tattybogle profile image
tattybogle in reply to Dolphin40

:)

Antibodies can arise which can grossly interfere with T4(FT4), T3(FT3) tests. The usual production is when someone is taking T4. They can be T4 and T3 antibodies together, in any ratio, or T4 alone or T3 alone. They can be mild or decisive interferents. They usually last for only a short period, but may return. If the thyroid hormone tests are wrong, then one has to rely on TSH. In this case there seems to be instability in the amount of TSH, owing to flares and remissions of the Hashimoto's attack. Given the relatively small TSH changes I wouldn't think there is interference there - usually you get ridculously high values for TSH of 100 or more.

Dolphin40 profile image
Dolphin40 in reply to diogenes

Hi

Its not the TSH that has interference but the ft3/4 they found. We don’t know what though. Do they not have to find out what is the exact interference as this could help her treatment? Thank you

A point that crossed my mind is that RTH usually runs in families (about 85% of cases) in which case discordant thyroid blood tests are often found in some close relatives - even if they have always felt well. So if you have thyroid blood tests from other family members it's worth looking for elevated fT3 and / or fT4 with a non-suppressed TSH.

Dolphin40 profile image
Dolphin40 in reply to jimh111

Wow. Its funny you should say that because my middle daughter who is five has peculiar levels. The first time she was tested her T4 was just on the border of high. Her TSH was 2 and her T3 was just above range. Three months later, her levels were similar but her TSH had risen to 4.5??? 😞

Dolphin40 profile image
Dolphin40 in reply to Dolphin40

Iv been told not to worry and it’s normal for a young child to fluctuate!?!

jimh111 profile image
jimh111 in reply to Dolphin40

Perhaps they do. If you get some family members with elevated fT3 or fT4 and normal TSH it would strongly suggest RTH. However, they would need to be clearly elevated rather than just elevated as this could just be a genetic trait.

Dolphin40 profile image
Dolphin40 in reply to jimh111

Ok thank you.

The big question is - if they have this, what does it mean for them and how do you treat!?! Thanks so much

jimh111 profile image
jimh111 in reply to Dolphin40

Many people with RTH have no symptoms (or very little) and do not need any treatment. Some with exactly the same mutation may be hypothyroid and need levothyroxine or other treatment. It's a complex subject needing specialist care. If money's not a problem it may be an idea for you and your partner having a TSH, fT3, fT4 blood test just to see if the results are abnormal (high ft3, fT4, non-elevated TSH) thyroiduk.org/help-and-supp.... If this were the case you would have more leverage to get Addenbrooke's to investigate. It's just another avenue of approach and would by no means be conclusive.

Dolphin40 profile image
Dolphin40 in reply to jimh111

Thank you. Yes we both tested and have no problems with thyroid levels x

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