I wrote a wee while ago, then stood back to try and tackle everything myself in the face of the GP not supporting a meeting with the endocrine clininc, beyond her having a word and never getting back to me since early November. I found a respected herbalist, have been specific in targetting excercise towards thyroid health, as I struggle to face GP's who cannot move beyond the whole test issue. I have all the symptoms I had 22 year ago when I became very ill, and I feel I am moving towads this situation again. My records show I was being diagnosed with hyperthyroidism, I found out by chance I had had Graves disease, but my first diagnosis was hypothyroidism. The result of work with the herbalist is that the pain in my thryroid glands has receded by about 90%. Sadly my overall health is not improving. I finally got a copy of results, which mean nothing to me. The copy is to faint so I am typing out what I see. I am not lonely, but feel very alone in this, and am nervous of GP's who struggle if you have a bit of a handle on your own health. Help would be so appreciated.
I was taken off thyroxine after about two years and remained largely very healthy for about 20 years.
Results of the last two bloods, I felt so ill they actually did send off twice.
HbAlc (IFCC) 20-41 mno1/mol Feb 2020 39 August 2020 No test
tsh Test 0.2-4.5 mU/L 2.3 1.3
Free t4 9-21 pmo1/L 11 10
Total t3 0. 9-2.4 nmol 1.4 No test
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Walk4life
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The blood test results you've posted above don't tell us very much, except that your FT4 was very low. Total T3 is not even the right test and doesn't give us much useful information. When were they done? And were you taking any thyroid hormone at the time?
Be very careful with herbalists. Some herbs could make things worse, and herbalists don't necessarily know much about thyroid.
It's bound to be over-whelming at first. There's a lot to take in. But, as you read, bits of it will start to fall into place. And, the more you read, the clearer it becomes. Don't hestitate to ask questions if anything doesn't make sense or if you get confused. There will always be someone to answer you.
Hello again Grey Goose, I am doing the homework now from all your contributions to bring my evidence together to speak to the GP tomorrow or Monday. I wonder if I can ask you as a follow on, if my T4 level is low at 10, where should I be hoping it would be improved to, and if the T3 is not particulary good what should I be looking to be offered.
Most hypos need their FT4 in the upper third of the range, or even higher. And, you won't know how good or bad a converter you are until it does get to that point. As you're taking T4 only, your FT3 level will depend on your FT4 level, as T4 is converted to T3. So, until you get your FT4 higher, and get your FT3 tested, there's not much point in talking about that.
Getting anything other than levo on the NHS is a long, weary battle, anyway. You'd have to see an endo. So, cross that bridge when you come to it.
I'm not on anything at all for some 20 years now, I am going to put the point, that both of my original diagnosis [one I didn't know about] were lifetime conditions, both graves and hypothyroidism and at the very least I should be on levo.
I am struggling to understand your very comprehensive reply. What is an upper range number i.e. 100 or 20 or..... and does this mean I should not ask for an FT3 test of any sort until I hopefull receive some treatment?
The range depends on the lab - ranges vary from lab to lab. So, you would have to use the range that came with your results. That's why I didn't give an actual number, but said the FT4 level should be in the upper third of the range.
By all means ask for an FT3 test, but you won't always get it. The NHS doesn't like testing the FT3.
I'm sorry, I didn't realise you weren't on levo. I just took it for granted. So, you were diagnosed with Graves? Were antibodies tested? If so, you're in remission, and I doubt you'd get any sort of treatment with those results because everything is in range. And doctors don't go by symptoms.
But, as I said above, it sounds more like Hashi's to me. Which means you still need antibodies tested.
I've just read your profile , it's interesting that you were alright for many years after being on Levo for a couple of years.
It's also interesting that they have written 'Graves' on your medical record, even though your need for Levo and thyroid scan show Hypothyroidism.
This does make me wonder if something i have read about is a possible explanation for your history of being well for years without any levo.
So....One question i would be asking them if i were you is "Did you actually test positive for Graves antibodies (TRab ), or was 'graves' just an incorrect assumption by someone at the time."
Because.... there are a few people who have both Graves disease AND Hashimotos and if this is the case , they would test positive for graves antibodies, but also have periods of hypothyroidism and show typical hashimoto's damage to the thyroid.
Hashimoto's hypothyroidism and graves hyperthyroidism can play 'tug of war' and so in effect cancel each other out for long periods, thus these people report having 'recovered' from hypothyroidism.
This may be a bit of a 'red herring' and i need to read your other posts again before i go spouting complicated theories at you.. but just wanted to say Hello and Welcome
Much of it may be way over your head if thyroid matters are new to you , but i thought i'd stick them up here anyway in case you find anything in them to help you understand the different forms thyroid disease can take, and how they can overlap in some people.
Thank you very much for such a comprehensive answer. It was actually thyroxine I was on. I became ill after I had glandualr fever. As in above I am really grateful and overwhelmed to know where to start, but I will give it a go. I will likely be back asking questions.
T4 = Thyroxine = Levothyroxine = Levo .... all are the same thing
Levothyroxine is the name for it when it's produced in a factory, rather than your thyroid gland, but its all the same stuff ... (it's 4 iodine atoms stuck together )
T3 = Triiodothyronnine = Liothyronnine = Lio .... all are same thing
Liothyronnine is the name for it when it's made in a factory (it's 3 iodine atoms stuck together)
Don't give yourself 'brain ache' we're here all year xx
It took me months to understand even the most basic concept of how TSH relates to dose , so take your time . it will all make sense eventually.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
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 thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Thank you Slow Dragon. I have always felt I had the illness in the first place as a direct to glandular fever which I had after waiting ages for them to diagnose that at almost the same time. I guess my main worry now is not knowing what to do to support my health, while I try to learn what all this means. I can see in the last two days I look very different, and my voice is going. This makes me really sad as I am a performer.
"this makes me really sad as I am a performer" what do you like to perform? I am a teacher and have found this journey incredibly hard, I have felt such loss when I wasn't able to deliver my lessons in a half decent way... It can really get to us. I felt I had lost everything.
I am starting to feel better now that I've learnt more about it. With the help of this forum, I can stand up for myself with the GP. I can pace myself physically and know to take vitamins and all. I've made some changes at work, not sure how it will be long term but feeling more hopeful for now.
Everyone is different of course, and it can take a while... Lots of support here. Hang in there!
I think I sent a reply to Slow Dragon thanking her for your question about performance. I am sorry I am pretty bamboozled by so much of this and then finding everyone again. I hope you can take the answer I sent to SD.
I probably don't have the financial wherewithall for private tests, so will try to take in as much of the info you have all given me as possible. Also I had heard that often NHS don't accept you as an endocrine patient if you have done private tests, is there any truth in this?
Slow Dragon, apologies somehow in all the wonderfull help I did not see your question. I really empathise with your feeling of not being able to be the teacher you want to be. You probably are, but suffer for it later. That is roughly what I do too. I have wee small production company, which is really about ethnologists who feel all the best stories should not just sit in archives, so we bring them out and [in normal times] into production. It's one of the most rewarding things I have ever been involved in. At a personal performance level I sing, and do readings and dance with two great friends, and we use music song and instruments to tell stories of the natural world, and includes us humans too. Thank you for asking, I just had a spurt of enthusiasm there.
Have you had changes in your female hormones? I was dx hypo during menopause. Put up with the symptoms as I expected them with menopause but got tested as they were so debilitating. I also have MS so there was alot clouding the picture. Female hormones work closely with thyroid hormones.
Interestingly 20 years ago, my endo was on leave and the young locum came back and said what was going on with me was to do with perimenopause, it was he who decided I 'was cured' acting I think from the best motives.
So, do you now have all your medical records to hand ?
Can you look back to the diagnosis for Graves Disease and see any T3 and T4 numbers and ranges and details of antibodies positive and over range - these might look like TPO : TG ab: TSI : TR ab : TSHR ab :
Obviously you do now sound very hypothyroid -
Once diagnosed hypothyroid, it doesn't get better or go away, and treatment is with T4 - levothyroxine and it is for life :
If you did have Graves back then this is an auto immune disease and as such it is for life :
Graves can wax and wane for very many years before and after treatment and is generally treated with Anti Thyroid medication for around 15 months and then stopped, with the suggestion to remove the thyroid either by surgery or taking down a tablet or drink containing Radioactive Iodine and then treatment for your primary hypothyroidism and life long medication with T4 - Levothyroxine.
A blood test is the next move, a TSH, T3 and T4 + antibodies + ferritin, folate, B12 and vitamin D would be the first bit of your puzzle ; simply throw the results and ranges back up on here and you will be advised accordingly by forum members.
This is where I started off my journey back to better health a few years ago now, and you too can get back to doing the things in your life that you enjoy, one step at a time, it is possible.
I'm with Graves Disease and had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicating and so much better, and you can be too and get back your life.
Tahank for this very heartening reply. I am going to spend Wednesday and Thursday buidling the first block in my case as it were and contact the GP on Friday morning. I guess I will need to say where I got my information. So wish me luck, well I know everyone here does.
Walk4life I would like to say, Thank Goodness I came across this site some 11 Months Ago! I have been ill with Hypothyroidism/Hashimoto's for some 10 Years to date. However, since finding this site and gaining the Superb information from all the Knowledgeable People on here, I am now feeling so much better. Albeit, I am still learning. I literally thank ALL the People on this site for their amazing knowledge regarding all aspects of thyroid and The important Vitamins we all need to take. I truly wish you well on your journey. xx
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Why does doctor want me to go back onto Levothyroxine before I am referred to an endocrinologist?
I am allergic to Levothyroxine, does anybody know what else I can take for hypothyroidism please?
Does anyone know how I would have become Hypo? 
Can anyone give me their opinion on what it feels like physically to have hypothyroidism 
I wonder if anyone can help me with these results and brief overview - not sure where to go next.
