Hi I am new, and I feel that I have been messed about with my GP. I was doing well on Levo/T3 combi therapy and my GP then decided to change my dose after my endo removed my T3 due to his lack of support for it. I was diagnosed hypothyroid in 2011 and have not felt completely well since June 2017 when I was on 200mcg Levo/20mcg T3.
100mcg Levo - changed by GP Sep 2017 and results taken Oct 2017
TSH 5.3 (0.2 - 4.2)
Free T4 13.9 (12 - 22)
Free T3 4.1 (3.1 - 6.8)
Ferritin 61.1 (30 - 400)
Folate 2.3 (2.5 - 19.5)
Vitamin B12 301 (190 - 900)
Vitamin D total 55.1 (50 - 75 suboptimal)
150mcg Levo - ordered by endo and done in August 2017 and dose changed to 100mcg by GP Sep 2017
TSH 0.03 (0.2 - 4.2)
Free T4 21.3 (12 - 22)
Free T3 4.6 (3.1 - 6.8)
200mcg Levo/20mcg T3 - ordered by endo May 2017,done in June 2017 and dose changed from 200mcg Levo/20mcg T3 to 150mcg Levo Aug 2017 at endo appointment
TSH <0.02 (0.2 - 4.2)
Free T4 38.3 (12 - 22)
Free T3 11.2 (3.1 - 6.8)
Whether I missed my optimum level in June I will never know but I felt best at this time.
Thanks for reading.
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Sunnylu
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Oh, you have Hashi's, don't you! Those August results are those of a Hashi's 'hyper' swing. Have they ever tested your antibodies? They ought to. Not that it would probably make any difference to them, because they don't understand antibodies, but you should know, because you can take measures yourself.
And, like a lot of Hashi's people, you have a conversion problem. Your nutrients are more than likely low, so you need to get your vit D, vit B12, folate and ferritin tested. If your doctors won't do all these extra tests, you can find details of private tests on the ThyroidUK main page.
Thanks no never been mentioned. I had high TPO antibodies before and hyper labs. My GP told me I was overdosing on my meds. I wasn't taking them at the time.
Yes, they always say that. Bunch of flaming idiots! No nothing about the disease they're supposed to be treating.
What happens is, after an immune system attack on the thyroid, the dying cells dump all their stock of hormone into the blood. So, FT4 and FT3 soar, and TSH consequently drops. A lot of people get 'diagnosed' as being hyper, at this point, but it's not true hyper, in that the thyroid isn't over-producing, and the high levels are only temporary. The extra hormone will get used up/be excreted, and the levels will go down, through euthyroid, to hypo, eventually. But, doctors seem to have no idea that this is how Hashi's works!
So, each time you go hypo, you will be that little bit more hypo, because there is less gland to make hormone. And, each time you got 'hyper', you're a little less 'hyper' because that's that many less cells to destroy. And, eventually, the gland will be shrivelled up like a nut, and you will be permanently hypo, and entirely dependant on thyroid hormone replacement to live.
You can slow the process down, but you can stop it. However, as the antibodies themselves cause symptoms, it is worth trying to lower them.
Added - I take 3 ferrous fumarate, 5mg folic acid, receive B12 injections and take 4800iu vit D3 (combined 800iu prescription, 1000iu D3 and 3000iu D3)
Folic acid is not the best thing to take. If you are having B12 injections, you also need to take a daily B complex to keep the Bs balanced. If you get one with at least 400 mcg methylfolate, it will be better for you than the folic acid.
As you're taking vit D3, you also need to take its cofactors : magnesium and vit K2 - MK7.
Taking vit D3 will lower your magnesium, so it needs to be replaced - most people are deficient in magnesium, anyway.
And, taking vit D3 will increase your absorption of calcium from food, so the K2 will make sure it goes to the teeth and bones, and doesn't build up in the soft tissues.
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.
Endo's don't understand you can't just add in T3 you must address low vitamin levels and also look at gluten and/or other food intolerances
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. 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
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"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
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