Super confusing test results - pls help - Thyroid UK

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Super confusing test results - pls help

Piggyoink
Piggyoink

Happy new year to you all! I hope this will be a better year for everyone xx

After almost 2 years of feeling awful and my GPs being useless, I was finally able to see an Endo. She believed ( also supported by ultra sound results) that I was being overtreated with thyroxine. She suggested I go off all meds for 3 weeks so she could see a ‘true’ picture of my thyroid function. I was kind of skeptical but didn’t feel too bad ( certainly a lot better than when I was on 100mg thyroxine)

The test results are below. She said I’m subclinical hypo and wants to start me on 25mg for a week, then 50 with follow up bloods in 6 weeks. I’ve told her I’m currently now taking two grains of metavive and feel good apart from a little constipated, and that I’ve also tested positively for the DIO2 gene so I don’t want to follow a T4 only protocol as that was what made me so sick in the first place.

What do you amazing people make of this please? Can post up previous test results for comparison... thank you so much in advance xxx

23 Replies
oldestnewest
HiddenThis reply has been deleted
Piggyoink
Piggyoink
in reply to Hidden

Thank you so much ReallyFedUp id previously been tested in June and September and no antibodies/ hashimotos were found... I can’t add any other images to this post for some annoying reason however I can state with certainty my hypothyroidism is not because of antibodies... so what do you suggest I do please? X

HiddenThis reply has been deleted
Piggyoink
Piggyoink
in reply to Hidden

So not just T4 then? Sorry for all the questions...!

HiddenThis reply has been deleted
paul1978
paul1978
in reply to Hidden

Hi what would be the symptoms of being toxic?

HiddenThis reply has been deleted
paul1978
paul1978
in reply to Hidden

I wonder if that’s me? Feel very tired. Not sleeping more than 5 hours. Right flank pain all day and constipation

Never had T3 tested and I don’t have a thyroid

Piggyoink
Piggyoink
in reply to paul1978

Hi paul1978 I guess it’s very independent on the individual. For me it started off with lethargy, then full blown exhaustion, massive memory issues, constipation, heart palpitations, headaches, hair loss, weight loss and general feeling terrible. All these symptoms manifested and became insufferable over a period of over 18 months. My blood tests were ‘normal’ and I kept taking the thyroxine like an idiot until I found this forum and answers here which were corroborated by independent and private test results and treatment. Anyway... you will know if something is wrong so you need to keep pushing to get to the bottom of your troubles. I wish you well xox

SeasideSusie
SeasideSusieAdministrator

Piggyoink

I don't know how an ultrasound can tell you that you're overtreated with Levo, happy for someone to explain that to me though.

Being off thyroid meds for 3 weeks will not give a "true picture" of your thyroid function.

As Levo has a half life of 7 days, it would probably take 8 weeks for any synthetic thyroxine to be out of your body completely.

I saw an endo many years ago who wanted my suppressed TSH in range, he reduced my Levo (not stopped it, just reduced my dose) and it took 3 months for my TSH to come back into range and my FT4 to lower.

What were your results that prompted your endo decided she wanted to do this experiment? This forum only allows the addition of one picture in the opening post only. You can type other results in.

What were your results originally that gave you a diagnosis of hypothyroidism and a prescription to start Levo?

This is why I trust you guys more than docs SeasideSusie xx basically, until June I had never seen a test result, just told for the past two years that my results were ‘normal’ in taking 100mg daily even though I felt like death. I never even saw my original test results for being diagnosed but just took thyroxine as prescribed without question. This increased to 125 then back down to 100 within a year of diagnosis, and because I felt so bad and wasn’t being listened to I paid for private tests this summer which showed I may have conversion issues ( which my GP didn’t believe in.) I then stopped thyroxine and started on metavive which literally revived me, so the results previous to these recent ones are below. This is after two months of one and a half grains of metavive and 25mg thyroxine daily. ( I had previously been on 100mg thyroxine only for over two years)

IgA 2.31 ( 0.70-4.00)

TSH 0.44 ( 0.27- 4.2)

FT4 17.1 ( 12.0- 22.0)

FT3 4.9 ( 3.1- 6.8)

Antithyroid peroxidase < 5 ( < 50 is negative)

Antithyroyd globulin <10 ( <100)

Test for celiac all negative, she did not test vitamin levels however I had these done from GP and they were all in great shape after been treated by the London clinic of nutrition who were thorough in their testing and knew exactly which supplements I needed for good thyroid function.

According to the ultra sound results, there are indicative markers ( like furrows or something) which show overmedication with thyroxine plus my thyroid is very small which are (apparently) signs of over medication. As well as the palpitations, weight loss, hair loss etc that I had previously complained about and been ignored but which have now disappeared... what do you think are the next steps for me now? I definitely don’t wnat to go back to increasing doses of thyroxine- I felt like I was dying.... x

SeasideSusie
SeasideSusieAdministrator
in reply to Piggyoink

plus my thyroid is very small which are (apparently) signs of over medication

Mmmmm, not sure I buy that. You can have a small thyroid because .... it's just small, or it may have been affected by Hashi's and there's not much left of it, or maybe someone like me who has been diagnosed and treated for well over 40 years there's nothing left for my thyroid to do and it could shrink (just a supposition, no evidence for that other that my imagination!).

Still not convince about the ultrasound business, these doctors do try and baffle us with BS so I tend to have a very healthy disrespect for them!

TSH 0.44 ( 0.27- 4.2)

FT4 17.1 ( 12.0- 22.0)

FT3 4.9 ( 3.1- 6.8)

How do you feel with these results? There's plenty of room for your FT3 to go higher, so increasing your dose of Metavive is a possibility, or maybe even changing to NDT (the Thai ones are reasonably priced I believe). Are you taking Metavive 2 or 3?

I’m taking Metavive II and felt better on those results hence why I went straight back to two grains post the 3 week total abstinence. I guess I should carry on with these and test again to see where I am lab wise and take it from there. It’s clear that metavive works for me as these results prove plus also how I’m feeling and by how much my symptoms have almost disappeared! X

SeasideSusie
SeasideSusieAdministrator
in reply to Piggyoink

In that case, I'd stick to Metavive for now, maybe increase if you feel the need.

You can only ever upload one photo to a post.

How does an ultra sound prove you are allegedly over-medicated? It may show that for whatever reason you have some degree of enlargement, but that can happen for instance when a thyroid is first beginning to fail and is trying to compensate for dropping hormone levels, so the opposite of being over-medicated. Only blood tests will indicate what are your blood thyroid hormone levels, and of course any symptoms and side-effects will indicate how your body is reacting - but there is no test to prove that the cells are being over-supplied with hormones. This tactic of some Endos insisting on taking patients off their meds "just to see what happens" is the subject of a number of posts. There was an article posted in one recent thread, explaining why it is pointless but I can't remember who posted it, in order to track it down. Perhaps someone else will remember. However, another point is that Levo has a long half life and therefore it is unlikely that it will be fully out of your system in only 3 weeks, so the T4 result won't necessarily be true in any case. However, what has she proved - she is going against NICE guidelines by prescribing with those results; unless you are elderly or have cardiac problems, she's going against NICE prescribing guidelines by prescribing only 25 mcg and then increasing after a week, and she's no more idea than anyone else if even 50 mcg will be the right dose for you and you could end up on the same dose you were on before. There seems to be little logic in the whole episode. I would run a mile from her.

Thank you MaisieGray for also taking the time to write in. Answers to your questions are above... this is why I’m so confused... I’m not quite sure which way I should be going now! :(

Given the gobbledegook spouted by your endo, whilst trying to prove she knows what she's talking about - the words 'wool' and 'eyes' come to mind - if Metavive makes you feel well, why not stick to it?

TSH 0.44 ( 0.27- 4.2)

FT4 17.1 ( 12.0- 22.0)

FT3 4.9 ( 3.1- 6.8)

Were these results on Metavive? If so, as Susie says, there's plenty of room for an increase, but they are nicely in proportion.

But, I have to take issue with you saying "I can state with certainty my hypothyroidism is not because of antibodies". For a start, it wouldn't be the antibodies making you hypo, anyway. TPO/Tg antibodies are not the disease, they are the result of the disease - Hashi's. And you can very well have Hashi's without high antibodies. In which case, you would be diagnosed by an ultrasound. And, the results of your ultrasound sound very much like Hashi's. And, if your endo knew anything about thyroid, she would have told you so, rather than spouting a load of old rubbish about over-medication on levo! Seems to me that, if you want to get well, you need to give this woman a very wide berth! :)

I posted this a few days ago, about people with small thyroids, high in range Free T4 and high TSH :

healthunlocked.com/thyroidu...

Sounds like it might be relevant to you.

Piggyoink
Piggyoink
in reply to humanbean

Thank you so much humanbean xx

greygoose
greygoose
in reply to Piggyoink

Except that you don't have a high TSH nor a high FT4...

humanbean
humanbean
in reply to greygoose

Yes, but I didn't know under what circumstances the results were from. I was mostly reacting to the comments about the small thyroid.

greygoose
greygoose
in reply to humanbean

Ah, ok. :)

But, I have a very small thyroid. I also have - or had - very high Tg antibodies, only just over-range TPO antibodies, a TSH of 13 and lowish FT4/3 when I was diagnosed. My thyroid is now dead. So, I don't think you can go on the small thyroid alone.

I read the article you posted, and find it difficult to believe that a small thyroid being the result of Hashi's (or Ord's) is just a myth. If Atrophic thyroiditis is so rare, how come so many of us have small thyroids? Especially when we also have high antibodies? I'm not convinced it's just a myth.

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