Blood test results - I have gone against endo advice

[MidnightBlue]

Hi, I saw an endo for the second time but as he had not arranged for me to have a blood test prior to the appointment there was little to discuss. I then had the blood test and he phoned me to say to stay on 100 levo 5 days and 75 levo 2 days. I asked him for the test results and ranges and was sad to see my TSH had risen sharply and my T4 was close to bottom of the range. I decided to take 100 mg levo 6 days and 75 only one. I will be seeing him again in a few weeks and I may need to argue my case, so I am hoping for reassurance that what I did was sensible. Thanks for your help.

[shaws Administrator]

You are very sensible as your TSH has risen too high on the dose you were on, so it is right that you've increased your dose.

I have no idea why he changed the dose you were taking on 11th September. They have no right to adjust our medication due only to the TSH which is a ridiculous thing to do, although they appear unware of this phenomenon. It messes up our metabolism and it has certainly increased your TSH and I assume symptoms.

The aim for most of us is a TSH around 1 or below, or suppressed if it makes us feel better.

Others will respond re your other blood results.

I hope you feel better soon.

[MidnightBlue in reply to shaws]

Hi Shaws, I saw a very junior member of the team in September, and he babbled on about TSH being suppressed. ( He also told me to stop taking iron, as my ferritin was low and he wanted to know why. As the only test he seemed to intend was to stop the ferritin I ignored this advice). I was just glad he was not saying to go back to 75 every day.

[sorrel89]

Well Done MidnightBlue, to be honest on the readings of Jan 15 I would have resumed 100mg daily, your endo clearly went on pure TSH readings. How did you feel back in Sep14? I think you could try raising your iron, B12 and folate a little more. I got into a terrible mess when doctors told me to reduce my dose of thyroxine based on TSH, it has taken me years to get better. One day I will let the doctors know how they caused so much mayhem and put me at such risk -when I have the time and energy to write it all down as it will be a lengthy task. Good luck with your next consultation.

[MidnightBlue in reply to sorrel89]

Thanks for your reply. I am supplementing b12 and iron. Ferritin seems to take ages to improve. I thought folate looked ok, but do you think I should supplement that too?

[sorrel89]

Folate does not look too bad but I would try to nudge it up to about 14. Yes, Ferritin can take along time to improve but makes a big difference in terms of helping optimal T4 conversion. Good luck

[MidnightBlue in reply to sorrel89]

Thanks Sorrel

[greygoose in reply to MidnightBlue]

MidnightBlue, if you are supplementing B12, you should also be taking a B complex, because the Bs all work together. If you get a B complex with methylfolate, that will bring your Folate up a bit.

Hugs, Grey

[MidnightBlue in reply to greygoose]

I do take a B50 complex Greygoose, but I have just looked at it and it doesn't seem to contain methyl folate. The b12 I take is methyl B12, but I guess that is different?

[greygoose in reply to MidnightBlue]

Well, methyl is the form of the B vitamin. Methylfolate is a better version of Folate, which is B9. B complexes often contain folic acid, which is not such a good form as methylfolate. Methylcobalamin (B12) is the most easily absorbed form of B12 - especially when it's sublingual.

[Aurealis]

Yes you're undertreated according to your test results and probably still are. Being undertreated can affect your hearing, you must have misheard him

[MidnightBlue in reply to Aurealis]

Pardon??? 😀

[crimple]

I see that you have antibodies. Have you thought about trying a gluten free diet. It greatly helped to reduce my TPO antibodies

[MidnightBlue in reply to crimple]

Hi Crimple, yes, I have given up gluten. My antibodies did return to normal, but last summer I felt unwell (mainly a constant sore throat) so I asked for them to be checked and unfortunately they had risen again,

[crimple]

Oh dear, that's not good. I also gave up dairy after a few months of gluten free. After 2 months making do with rice milk etc I decided to try the lacto free dairy products available under the Arla name and use them all the time now and my TPO level last week was 13. I see you have both antibodies, I think the Tg are associated with being hyper, so not entirely sure if gluten/dairy free is the answer for them. I read Isabella Wentz book about Hashimoto's, might be helpful for you. Hope so.

[MidnightBlue in reply to crimple]

I am vegan ( so no dairy), and I gave up soya when I gave up gluten. I was very upset to find out my antibodies had risen, as I don't know what else to do. I supplement selenium too, which had been shown to reduce antibodies. I feel I should give up all grains, but I might possibly starve to death if I did!

[shaws Administrator in reply to MidnightBlue]

This is a link re the book crimple recommends.

thyroidlifestyle.com/

An excerpt below from a very good link which is informative:

In reality you should not have any autoimmune antibodies in your body at all although of course you do need normal antibodies to provide you with vital resistance to infectious diseases, etc. If you do have autoimmune antibodies, you can be sure that they will be doing you no good. Furthermore, if you have one type of autoimmune antibody active in your body, you may well have others to go with them, and they won't be doing you any good either.

In practice, because thyroid antibodies levels tend to wax to wane, they may not always show up as being abnormally high in a blood test – the trick is to catch them when they are high! In Dr Bo Wikland's clinic in Sweden thyroid problems are routinely investigated using the Fine Needle Aspiration (FNA) technique. Dr Wikland's experience, as published in The Lancet (2001 and 2003), is that FNA is actually very valuable in the demonstration of thyroid autoimmunity; superior in fact to antibody testing. It is interesting to note that Dr Wikland has noticed that when the TSH level is suppressed, thyroid antibodies will be suppressed also, so here is a further argument against TSH as the golden measure of thyroid health (discussed in the first 'Myths' article).

thyroiduk.org.uk/tuk/thyroi...

We have to read and learn to recover our health as best we can.

[MidnightBlue in reply to shaws]

Thanks very much for the link. So far I have only read 'Help for Hashimotos'. I did all the things he said to do for phase 1 ( getting antibodies back to normal) but they are still high. I will continue reading. I didn't know suppressed TSH can reduce antibodies, that is very interesting, (but I am sure my endo will have no idea about it)

[crimple]

Shaws thanks for finding the link, I am very busy at the moment, Fascinated to read what you had to say about FNA and TSH and antibodies in swedish research. I am expecting call from GP today to discuss my bloods results. Tsh 0.16 in range 0.2-4.2 no doubt will be asked to reduce levo. Hope I am not tempted to use a few choice words. My TPO has come right down from 120-13. B12 and Vit D both very good, need to do something about folate level and waiting for private result of T3. Suspect i could be a bad converter!

Midnight blue I don't know what the answer to your problem is unless you can join the Swedish research programme, sounds as though they are really on to something there! Best wishes

[MidnightBlue in reply to crimple]

Good luck with your phone call. Congrats on reducing your antibodies. I am now looking at the theory that supporting the mitochondria might help.

[crimple]

Let me know wjhat you find out about supporting the mitochondria, thanks