Hi all, trust everyone is well, after 7 months of waiting for all my thyroid results from my doctors and receiving nothing even after I requested them on more than one occasion and went in to speak to them, I have now received an appointment for endo. I had a total thyroidectomy when I was 17 because I had over active thyroid, I'm now 34, I'm on 100mg of Levrothyroxine and have been for many years. Bloods always come back "normal" according to the docs, what normal is I don't know, I never figures and I haven't been given my medical records to find out. I've had bloods tested for multiple things and they come back fine, I'm just so tired of feeling tired, gaining weight, having hair loss and all these symptoms that seem like underactive thyroid, but I feel like I'm being fobbed off when I ask about my thyroid.
I would really appreciate it if someone could advise me on what to say or ask at my endocrinology appointment.
Many thanks and thanks in advance
Written by
JILalways
To view profiles and participate in discussions please or .
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
You may be disappointed with your Endo appointment I'm afraid. Most are diabetes specialists and dont know how to help us get well.
Members here find that raising their vitamin levels to OPTIMAL helps their thyroid hormone to work well.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
To follow on from Jaydee1507’ advice I’d say - expect it to be somewhat disappointing and then you can only feel cheered if it isn’t. In the whole year I was treated for Graves Disease I only had one really positive experience when I came out feeling good. Same with rheumatology, you get yourself there, wait for ages, next thing you’re out in a corridor thinking ‘Hmm🤔’. I’d say, the less you expect, the more you will get out of it.
Seriously though, jot down any questions you have. I’d stick with the main / most important to you things that are bothering you at the moment otherwise you will lose your consultant’s attention.
Always get a copy of your blood test results - I do my own with Medichecks now and that way you get a full thyroid panel plus vitamins, minerals, inflammation etc done. Just remember you might be ‘within the range’ but that doesn’t mean to say that’s optimal for you.
So guessing you have Graves Disease and why you had a thyroidectomy at such a young age ?
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 10mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.
T4 - Levothyroxine is a pro-hormone that needs to be converted in your body into T3 -
which is the active hormone that runs all your body - much like fuel runs a car - and thyroid is responsible for the full synchronisation of your body from your physicality and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Ones ability to convert T4 into T3 can be compromised by non optimal levels of the four key core strength vitamins and minerals - ferritin, folate, B12 and vitamin D -
and conversion can also be down regulated by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing - and there are also some people who have a genetic disposition and can't easily convert T4 into T3.
So it might make sense to get a full thyroid panel run to include all the above 10/11 co-factors and post the results and ranges back here in a new post and then we can talk you through what it all means and suggest your next best steps back to better thyroid health and how to approach the endocrinologist - primed with questions, and the answers beforehand.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings -
and we generally feel best when the T4 is in the top quadrant of its range at around 80% with the T3 tracking just behind at around 60/70% through its range - at around a 1/4 ratio T3/T4 :
You must not be dosed or monitored on a TSH seen in isolation - or with just a T4 reading - which I'm fully aware is what tends to happen in primary care.
The TSH relies on the HPT axis working well - but without a thyroid this circuit loop is now broken - and the TSH a very unreliable measure of anything - as your Hypothalamus - Pituitary - Thyroid feedback loop now broken as there is no thyroid in situ to complete this circuit loop -
There are 3 main thyroid hormone treatment options -
Some people can get by on T4 monotherapy - Levothyroxine - the cheapest option.
Others find that at some point in time Levothyroxine doesn't seem to work as well as it once did - and that by adding in a little T3 - likely in a similar dose to what their thyroid once supported them with, they are able to restore T3 and T4 hormonal balance and feel better.
Others can't tolerate T4 and need to take T3 monotherapy - Liothyronine.
Whilst others find their health restored taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and is derived from pig thyroid dried and ground down into a powder which is then made into tablets referred to as grains.
Currently your primary care doctor can only prescribe T4 - with anti-depressants being the 2nd line option which do not work - and you need a referral to an endocrinologist to be assessed as to your need for any other treatment option.
New patient NHS prescriptions for NDT seem impossible and it has become something of postcode lottery as within some ICB areas financial constraint and rather than medical need seems to be in place -
if you go into openprescribing.net - you can see by surgery and / or ICB area how many prescriptions are being written for T3 compared to other surgeries in your area - and it might just help if you know how supportive of T3 prescriptions your surgery is compared to other surgeries in your catchment area - also you can look at ICB area to area comparisons.
just enter Armour ( leading brand ) as the drug for the NDT treatment option -
and for T3 - just enter Liothyronine as the drug - for the T3 thyroid hormone option.
If you can afford to go private you will find a very different landscape - Thyroid UK - the charity who supports this patient to patient forum holds a list of recommended thyroid specialists and endocrinologists so you may like to look at this in time - just email admin @ thyroiduk.org asking for the list of friendly thyroid specialists NHS and Private.
If with Graves - the most well rounded of all I ever researched is that of Elaine Moore - books and website - elaine-moore.com
Hello...you'll get good advice on here. My tip is to always ask for your test results, as it's your right. You can assess the situation more clearly then. Whether your GP/ endo wants to respond to your questions is another matter, but bring those results to this site and the excellent Admin will help you see a way forward. Good fortune...
Those results look reasonably good. So if you feel terrible I would suggest you need to know if your Free T3 is good or not. T3 is the active thyroid hormone required for every cell in the human body. Low levels are probably the main cause of hypothyroid symptoms.
People who have had a thyroidectomy are often found to have low Free T3. The body (theoretically) converts enough T4 to T3 within the body. Doctors assume that everyone can convert well, but this simply isn't true.
In healthy people who have a healthy thyroid and can convert T4 to T3 well, about 20% of their T3 comes from their thyroid. Doctors think that conversion of T4 to T3 makes up for that when the thyroid is removed, which is simply not true, and is just wishful thinking on their part.
Another effect of being hypothyroid, no matter the route that got you there, is that patients end up with low levels of nutrients, usually because they develop low stomach acid and can't digest their food well. So getting Vitamin D, Vitamin B12, folate, and Ferritin (iron stores) tested is a good first step to finding out how good or bad your nutrient levels are. If ferritin ends up being low it is a good idea to get an iron panel done too.
...
If you are having trouble getting access to your blood test results, you could ask for a paper copy (or you could ask for it in another form e.g. on a CD, but I don't know how easy that is). If the surgery put up barriers, follow the advice given by the Information Commissioner's Office in the following link :
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Calf's feel heavy & tired
Help with questions for Endocrinologist 
Endo appointment
Large thyroid
First Endo appointment 
