In my last message I posted my lasted results and asked for advice:
'Results were:
Serum TSH 0.05 mIU/L (0.4-5.0)
Serum free T4 17pmol/L (9-19)
I am seeing an endo in November and have made a GP appointment for the following day.
I am anticipating that the endo/GP will want me to reduce from 100mg of levothyroxine to 75mg.
I just wanted people's opinions or thoughts on these latest results and whether I should fight to stay on 100mg of levothyroxine or just accept that I go down to 75mg if that is what is suggested.
I have never had T3 tested so considering getting my T3 level tested.'
I decided to get my FT3 tested privately before seeing the endo and I have just had the result back from Medichecks:
Free T3 4.47 pmol/L ref. range 3.10 - 6.80
It is within range and so I'm assuming that I am converting T4 to T3 sufficiently? I'm I correct in thinking that FT3 should be at least midway in range. I am not very good with numbers but by my calculation midway is 4.95.
Does anyone have any advice to offer on the above results as rightly or wrongly I am anticipating the endo will be of the opinion that I should reduce my levo because of the 0.05 TSH (by the way I tested postive fo TPO Ab 768 IU/mL > 100IU/mL).
I want to go to this endo appointment armed with arguments against my levo being reduced!
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Lje05
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I'm I correct in thinking that FT3 should be at least midway in range. I am not very good with numbers but by my calculation midway is 4.95.
FT3 should be where you need it to be, there are no set rules. Generally it should be in balance with FT4 near the upper end of their ranges which is where most treated hypo patients feel best.
Free T3 4.47 pmol/L ref. range 3.10 - 6.80
It is within range and so I'm assuming that I am converting T4 to T3 sufficiently?
You can't work out your FT4:FT3 ratio unless both are tested at the same time.
However, your FT3 is low in range - just 37% through range.
FT4 17pmol/L (9-19) is near the top of the range at 80% through.
Therefore your FT4 and FT3 are unbalanced, both should be at the upper end of their ranges if that is where you feel well.
You could do with some T3 added to your Levo.
Serum TSH 0.05 mIU/L (0.4-5.0)
I am anticipating that the endo/GP will want me to reduce from 100mg of levothyroxine to 75mg.
I just wanted people's opinions or thoughts on these latest results and whether I should fight to stay on 100mg of levothyroxine or just accept that I go down to 75mg if that is what is suggested.
Yes, the endo, if he is TSH obsessed like most of them, might want to reduce your dose of Levo. However, FT4 is in range and your private FT3 test shows that is low in range so you are not actually overmedicated.
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.
Dr Toft has written an article in Pulse magazine in which he said:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.
So whether you accept a reduction or fight to stay on 100mcg Levo or try and get T3 added is down to you and how you feel.
As you have Hashi's, have you followed the recommendation to go strictly gluten free? Also, Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut/absorption problems go hand in hand and very often low nutrient levels are the result. If not already tested, it would be a good idea to ask for
I can’t face the fight of trying to obtain a prescription for T3 knowing how difficult it is to get one but I definitely intend to fight to stay on 100mcg of levo.
I am doing all I can to help myself: taking selenium 200mg daily plus a B complex and B12.
I did ask GP for nutrient testing. She only requested B12 and Vit D and the lab declined to test my Vit D. B12 was low in range and I did a private Vit D test ( 91.2 mmol/L >50 adequate). I also went gluten free a couple of months ago.
As I do have hashi’s I’m I also correct in thinking that it can result in my TSH fluctuating?
I am hoping the endo I am seeing is not TSH obsessed, but not holding out too much hope seeing some of the shocking consultations with Endo’s people on TUK have described lately!
I have the Pulse article and various other articles to back up my argument not to have my levo reduced but I have to say it is not a fight I am looking forward to.
It has taken this long (I have been on 100mcg levo since the end of July) for me to start to feel well again and I don’t want to feel that ill again because an endo doesn’t know enough about hypothyroidism and/or isn’t prepared to listen to me.
As I do have hashi’s I’m I also correct in thinking that it can result in my TSH fluctuating?
Yes, the antibody attacks will cause fluctuations in results.
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. These are called 'Hashi's flares or swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a doctor understands about Hashi's and these hyper type swings, then they panic and reduce or stop your thyroid meds.
The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.
So, the lower the antibodies, the fewer the attacks and hopefully you remain more stable.
You can always self medicate with T3 which is what a lot of us do.
Yes I do feel stable at the moment but earlier in the year when I was on 25mcg and then 50mcg of levo I wasn't.
I'm hoping that being gluten free will eventually lower antibodies and result in fewer attacks.
From reading messages on TUK I am aware that many people do self medicate with T3.
If my levo is reduced and I start to feel ill again I would definitely consider self medicating with T3 as I don't want to feel that ill again when I was struggling to go to work! My concern with self medicating with T3 is the cost and the difficulty of obtaining it.
It was easy enough to obtain when Greek Unipharma was available. There are sources for Turkish Tiromel and Mexican Cynomel which members use. Cost isn't that bad (depending on your own budget's demands of course). T3 from Europe doesn't attract VAT and collection fees at the moment and last time I checked comes in around 65 Euros (about £57ish) for 300 tablets, no postage. The Mexican T3 does attract VAT and collection fees if you are unlucky and the T3 is about £62 for 300 plus shipping which I think is around £12ish.
I think that as you feel stable at the moment, then emphasising this to your endo, plus the Dr Toft Pulse article, and showing your FT4 and FT3 (he can always do his own!) are within range, should hopefully help.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's
With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Gut issues lead to food intolerance and most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
I am gluten free and have had B12 and Vit D tested (see my reply to Seaside Susie)
I was experiencing digestive issues earlier in the year and tried all of the helpful advice posted on TUK including probiotics, apple cider vinegar and bone broth. I am no longer experiencing any digestive issues so hopefully my gut lining is healing.
I have really benefited from all the knowledgeable people on TUK. If I hadn't researched for myself and just relied on the GPs I have seen I would probably not have got a prescription for levo and would still be feeling awful!
Yes I am also taking a good B complex and have stopped B complex a few days before any testing because of the biotin. Again I know to do that because of all the useful info on here.
I asked the GP for ferritin test but she didn't ask the lab to test for it. At some stage I will probably get it tested privately. NHS so reluctant to do this tests or at least they are at my surgery. I asked them to do antibody tests as my results were sub clinical (my TSH level hadn't reached the magic no. 10 at 9.8) so I wanted to know if I was positive for antibodies.
Ha Ha yes maybe instead of standing my ground on staying on the same dosage I should ask for an increase! If the endo I am seeing is of the same ilk as some of the people messaging on here have had to suffer that will annoy him!
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