I have taken Levothyroxine for last 30 years. Originally 150 Mcgraw then recently downed to 125 and then 100
Was quite unwell when started but treatment seemed to work. Recently feeling unwell, nauseous, weight gain etc and have had various tests as they seemed to think thyroid ok. 2 weeks ago I had ultrasound scan on neck as worried about a lump wand was told my thyroid gland had totally atrophied. Waiting for follow ups and what hsppens next. Can anyone give me advice on this and what I should be doing now.
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Sewingmad
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It sounds like you need your dose increased again - why was it decreased in the first place?
Don't know what you mean by 'what does one need to replace a thyroid gland'. Do you mean a transplant? Or what sort of dosage? That really depends on the individual. My gland has been killed off by Hashi's, too, and I take 68.25 mcg T3 and 25 mcg levo. But, that would be a very odd dose for most people. It just happens to be what I need.
Your correct dose will have to be found by trial and error - what to take (levo only, T4+T3, NDT, T3 only) and how much. Unfortunately, a lot of doctors don't allow the patient to experiment and consider that they know best! They don't, of course, they're not living in your body, and know very little about thyroid, anyway. And often insist that all they need to test is the TSH! So misguided. No-one can tell you in advance what treatment is going to be best for you, I'm afraid. It's something you're going to have to fight to discover.
First step would be to get hold of your blood test results, and find out what they're testing, and what the results have been so far - why did they reduce your dose?
Did not take much notice at that point. Will ask doctor for more blood tests next week. This is why I am trying to find out differences between T2 3 and 4 and what I need to ask about.
T2 doesn't really concern you. To my knowledge it is never tested for, and only very rarely replaced. The thyroid gland makes only miniscule quantities of T2 and T1, it mainly comes from conversion.
T4 (levo) is the storage hormone, converted to T3 as and when require, in a healthy body - the gland does make some but not nearly as much as it makes of T4. But the problem often arises that the hypo body doesn't convert very well - something doctors fail to understand.
T3 is the active hormone, needed by every single cell in your body.
Standard treatment, these days, is levo only, which is a problem for people who don't convert very well. It is possible to add T3 to the levo, but finding doctors that understand the need for it and who are willing to prescribe, can be difficult.
Then there is NDT - Natural Dessicated Thyroid - made from pigs' thyroid - that is very, very rarely prescribed. Most people that take NDT buy their own. It contains T4 and T3. Like the other types of thyroid hormone replacement, it has its advantages and disadvantages. No form of THR suits everybody.
The standard thyroid test results went up
I'm afraid I have no idea what you mean by this. TSH? FT4? You really need to get print-outs of your results so that you can learn to understand them (most doctors don't!). You need the actual numbers - results and ranges.
Hello greygoose. While this is off-topic, hopefully you won't mind if I ask why you have changed your dose from 75mcg T3 only to 68.25 mcg T3/25 mcg T4 (assuming my recollection of your past postings is correct)?
I ask because my wife went T3 only (40 mcg T3) but found she had to take the occasional T4 (25 mcg) to stave off dryness of the mouth in particular. When I say occasional, I really mean it - usually a single 25 mcg T4 tablet a month! She certainly would not be able to tolerate taking T4 daily nowadays.
I think the only answer I can give to that question is: curiosity. To see what would happen - would I feel any better? Would I feel any worse? To begin with, I found it helped with my breathing - I didn't get so winded. But, that effect wore off, and now I don't feel any different to when I was on 75 mcg T3 only. I don't have any trouble tolerating the daily 25 mcg. Increasing it to 50, with another reduction in T3 or without, doesn't suit me. But, the 25 is fine. And, I feel I'm covering all bases, now, just in case the T4 does have functions other than being a storage hormone.
There's a recent obsession by medics to reduce thyroid patients Levothyroxine down to bring TSH within range
But many patients need suppressed TSH in order to have high enough FT3
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 articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
When under medicated low vitamin levels are extremely common
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If 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. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Went to doctor today to discuss this and asked for last test results but she have me numbers which I think seem to tie up with figures I have read on your website.
TSH 0.73
Ft4 17
VITAMIN Denise 54
Magnesium 0.79
Could anyone feed back whether these are high low or ok. I am getting another blood test because of scan result but she seemed to think my results were fine although my dosage of Levothyroxine is only 100 Mcgraw now and I originally took 150 Mcgraw for very long time.
We always need the ranges on test results as each lab is different
Just testing TSH and FT4 is inadequate you need FT3 tested too (NHS often refuses to test FT3)
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Vitamin D, if in UK and measured in nmol at 54 is too low
Magnesium possibly low too
Aiming to improve vitamin D to around 100nmol. Vitamin D mouth spray by Better You is good as avoids poor gut function. It's trial and error what dose each person needs. Perhaps 2000-3000iu daily for 2 months and retest
Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
Thank you. Will look into all of that. Think my GPS thought I was probably worrying about nothing but waiting to see if she does thyroid antibodies test as she did mention that.
Common as we age and menopause etc for vitamin levels to drop, often due to lower stomach acid
Low vitamin levels often results in reduced conversion of FT4 to FT3 and TSH drops.
We become more hypo, but TSH doesn't show it. That's why it's completely inadequate to dose just on TSH and FT4
Essential to test antibodies and vitamins
If you have Hashimoto's then often strictly gluten free diet helps or is essential
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
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