Hi all. I had an ultrasound on my neck to check out a lump on my lymph node. It turns out it’s nothing and no sinister findings. They did check all around my neck and throat and upshot is my Thyroid gland is, in her words, “shrivelled”. She asked if I was being seen by an endocrinologist (I’m not). I am however in 125mg Levothyroxine (diagnosed under active thyroid 18 years ago)
Anyway. The ultrasound Results will go to my gp. Of course I’ve googled it and I’m having difficulty understanding what this means for me. As far as I can see the bottom line is that the Atrophy of the thyroid leads to me not being able to convert T4 in the Levothyroxine into T3 (wot my body needs!). So. I suppose I need T3 directly. I already have an appointment to see my doctor on 31st so I shall have to do more research. Let’s hope it’s going to be ok 😱
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Vivb56
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Although a working thyroid does convert some T4 into T3, it is only a contribution to the conversion processes.
On the further negative side, you are also probably getting less T3 made within the thyroid (as distinct from "converted by the thyroid").
On the positive side, conversion takes place in liver, kidneys, etc. And, in some tissues, gets converted locally.
We often see mention of Hashimoto's thyroiditis and, officially, that has a stage in which there is a goitre. However, if there is no goitre, it might be called Ord's thyroiditis. Just don't expect anyone - medically trained or otherwise, to really appreciated the distinction.
And, in the UK, all forms are usually bundled together as autoimmune thyroiditis.
Need for T3 depends on how you are doing. You need TSH, FT4 and FT3 tested. Ideally before your appointment so the results are available for discussion.
As helvella said, you probably have Ord's. Have you never had your antibodies tested?
I have Ord's, and my thyroid shriveled up a long time ago - my one and only ultrasound was about 25 years ago and it was the size of a pea then. But, I converted pretty well. My problem was that I couldn't tolerate levo (T4), probably due to having been undiagnosed for a long, long time. So, I now take T3 only.
Do you get copies of your blood test results? If you're in the UK it's your legal right to have a print-out. If FT4 and FT3 are tested at the same time it will show you how well you convert. Important to get both tested, anyway. But I think you'd know by now, by how you feel, if you're a poor converter.
Apart from that, and the possibility of false 'hyper' phases, there's nothing different in having Ord's to any other cause of hypo. The bottom line is: your thyroid can no-longer make enough thyroid hormone to keep you well and you are therefore reliant on thyroid hormone replacement - levo or other. So, I wouldn't worry too much about it at this stage, if I were you.
Hashimoto’s, to be technically correct causes a goitre
Wether it’s hashimoto’s or Ord’s, the cause is autoimmune and the results are the same……you become hypothyroid
How do you feel
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you taking
As your hypothyroidism is autoimmune are you on gluten free/dairy free diet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
VERY important to test TSH, Ft4 and Ft3 together
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Just for reference a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. with T3 is said to be around 4 times more powerful than T4.
Some people can get by on T4 only :
Some find they need to add a little T3 - probably at a similar dose to that their thyroid once supported them with - to restore thyroidal T3/T4 balance :
Some can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3 :
Whilst others take Natural Desiccated Thyroid - which is derived from pig thyroids , dried and ground down into a powder and then generally made into tablets referred to as grains and contain all the same known hormones as that of the human thyroid gland.
Currently your primary care doctor can only prescribe T4 and you will need to be assessed and sanctioned by a NHS endocrinologist for any other treatment option -
with NDT now off the NHS table - due more to cost than anything else - since this is the original successful treatment for hypothyroidism and been used for over 100 years -
Big Pharma's synthetic T3 and T4 treatment options are now more readily and cheaply available.
If you reply within the forum members post they get advised of what you say :
We can all read everything that is being written - you don't need to keep repeating yourself :
I'm presuming the above comment for me - thank you -
anyway if asking questions and wanting further information from a certain person you need to make sure you reply to them, within their post using the Reply icon -
and their name comes up as you start writing - as then they are sent an email - to respond to the other forum member.
I found out a few months ago at an RA Clinic that my thyroid which had 2 poss 3 nodules on it internally now is also atrophied. Last scan was roughly 2cm. I requested an Endocrinologist appointment (after being refused for a few yrs and being sent to allsorts of clinics other than Endocrinologist). I saw the Registrar of the Consultant (after overhearing a conversation with staff saying they didn't know where the consultant was)after all the waiting, and being armed with info from this site, I can only say it was an absolute waste of time. The Registrar was clueless to everything I asked. I'll be monitored every 6 months, but when I asked about T3 had a mumbled no and a rabbit in headlights expression. Consequently if I were you request an appointment with Endo, get private full results if you can, then read as much as you can on here about it. If you're lucky and get a good Endo then they'll help if not see how you go with Levo 125mg( same as me)and if you think you need T3, access it privately and look or ask on here about doseage. All trial & error, but I've had no help at all from Endo or GP.
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