Hi All. (Just FYI, diagnosed Graves & hyper Jan 21. RAI June 21. Diagnosed hypo Aug 21).It may seem silly to say that until I joined this group, I thought that accepting that "feeling better" is not the same as "feeling well", and I had wrongfully been accepting of the fact that since starting my thyroid journey in 2021, I would never feel the same as pre-thyroid. At the time my TSH was hovering around 1.5.
Fast forward to earlier this year when I started investigating more about my condition, and researching, then hearing an Endo consultant on a British Thyroid Foundation zoom call say that treatment should be patient led, and just because one might be in range does not mean that the patient is well and they are back to pre-thyroid levels, and I thought, wow that's me! So, I went to my GP armed with info I had gleaned from here and from NICE guidelines and said I still don't feel well still, can you increase my levo. Of course the answer was no, you are within range, even though my TSH had gone up. I went back again in June, and had the same response asking could I just trial an increase, again, negative response.
So I stamped my feet and told him I had been discharged from Endo care into the care of my GP, and as a GP you should now be making the decisions. He refused and referred me back to the Endo. So I have waited from April until Sept to get this appt, which is next week, whilst all the time feeling more and more rubbish, until finally today I got my blood results from Monitory My Health which has confirmed that I am now out of range, and has more than doubled since June!
I assume that now I will be allowed to increase, but could someone please also look at my results and let me know if there is anything else which jumps out that I can add into the conversation when I see the consultant?
What might be the reason for such a jump in TSH in less than 3 months, is it purely down to the lack of the correct dosage of levo? Thanks in advance and sorry for long post. I've added all results from April/June/Sept.
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BlueSkiesAbove
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Graves is an auto immune disease for which there is no cure and for all things Graves suggest you look to Elaine Moore who went this same procedure as your good, and me , and finding no help with her continued ill health started researching this poorly understood and badly treated AI disease around 20 years ago ; elaine-moore.com .
Once treated with RAI thyroid ablation you are not seen as with a life threatening health issues any longer and the hospital discharge you back out to primary care where it is believed your doctor is better able to treat you.
RAI thyroid ablation is a slow burn and said to be more difficult to treat as this toxic substance is slowly burning out your thyroid gland in situ.
RAI also burns out HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop - on which TSH relies - and why you must be dosed and measured on your Free T3 and Free T4 readings - and face reluctance/discourse in primary, where doctors routinely work on just TSH readings.
RAI can also to trash your core strength vitamins and minerals and these need to be maintained at optimal levels in order for any thyroid hormone replacement to work well.
We tend to feel best when the T4 - which is inert and a prohormone - is in the top quadrant of it's range as this should convert to a decent level of T3 - the active hormone that runs the body - at around a 1/4 ratio T3/T4.
The accepted conversion ratio is said to be 1 / 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in this ratio at 4 or under and to find your conversion you simply divide your T4 reading by your T3 reading.
The thyroid is a major gland responsible for full body synchronisation from your physical through your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Some people can get by on T4 only medication - Levothyroxine.
Some people find that at some point in time T4 alone doesn't seem to work as well as it once did and that by adding in a little T3 - probably to replace that lost when your thyroid was fully disabled they can restore T3 T4 hormonal balance.
Some people can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find their health improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
Are you eyes involved at all, dry, gritty, sore, watery - just ensure any eye drops or preparations you use are Preservative Free even those prescribed by the NHS.
pennyannie thank you for your reply. Yes, my eyes are everything you said, so much so they sometimes wake me in the night as if someone has stabbed my eye with a pencil. I've just been using Hycosan but they have worsened in the last 3 weeks. I've read and re-read your post but I am struggling to understand some of it, particularly "A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg." This means 100mcg T4 (levo right?) and T3 10mcg, but what are T1 and T2 and calcitonin? Also, "The accepted conversion ratio is said to be 1 / 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in this ratio at 4 or under and to find your conversion you simply divide your T4 reading by your T3 reading." In my case just doing the calc that would be 3.9 (15.6/4), but would does that actually mean? I forgot to mention that I am on 75mcg of levo (T4 right?).
Maybe consider a more ' heavy duty ' tube of grease - Preservative Free - for o/night - you won't be able to focus too well - so use it just before bed - but you'll still see your dreams - good or bad !!
T1 . T2 and calcitonin are other hormones produced by the human thyroid but only in very small trace levels - and considered not necessary to replace by mainstream medical.
Levothyroxine - is T4 - and Liothyronine is T3 :
Your T4 is only around 36% through the range and there is no point checking now - as until your T4 is in the top quadrant the range the body preserves T3 at the expense of T4 - so currently the ratio is not a true representation of your ability to convert T4 as you can live without T4 but you can't live without T3.
The fact is once on thyroid hormone replacement we need the TSH - even though it's unreliable seen in isolation - down under 2 an likely eventually under 1 and possibly towards the bottom of the range when optimally medicated.
Once your dose of T4 is up in top quadrant of the range at around 80% you can think about your T3 result and dividing it into the T4 result -
hopefully you will be feeling better then, anyway, and it's just a little ratio -
and if your result comes in above the upper end of the ratio 4.50 and wide of the centre marker at 4 - it shows your struggling to convert T4 into T3. and a slowed metabolism.
Conversely if your result came in below the lower end of the ratio 3.50 - it may suggest your metabolism running too fast for you.
Thank you. I think I've grasped it now! Thanks for the link to Elaine Moore, I'll have a look at this. Going back to vits and minerals, is there anything I should be supplementing right now, or do I wait until I've got everything back in order?
I now self medicate with NDT and am much improved but still need to supplement all the vitamins and minerals - and aim to maintain my ferritin at around 100 : folate around 20 : active B12 75 ++ ( serum B12 500 ++ ) ad vitamin D at around 100.
Mainstream medical do not really study vitamins and minerals :
You may find selenium of help - many do - and it's now mentioned more widely through endocrinology but you should run a blood test first to ensure you need it - maybe the endo can run that blood test for you as I'm dammed sure you doctor will not.
Depending how ' bad ' you eyes are you may need to see an ophthalmologist with an interest in Graves - were you having eye issues before the RAI or did it just show it's face after this treatment option - as RAI is known to exacerbate eye issues - it did for me - though I just faced denial back in 2008 and only started reading around Graves when very unwell in around 2014/15.
If you press the icon alongside anybody's reply to you or go to their Profile Page you can read their thyroid journey and all they have ever written on this open - patient to patient forum.
Conversely we can read all your information pressing on your ' face ' :
Thyroid UK is the charity who supports this forum and full of very useful information and services that you may need to use so you might like to register and get quarterly updates - thyroiduk.org
I know - it can be information over load - especially when unwell - but hopefully worth a read as I can't do cut and paste - so I shouldn't sound like too much of a broken record.
Thank you, glad to hear you are much improved now and appear to have good control of your thyroid. I've had dry eyes since RAI and saw an ophthalmologist in Aug 21 who said I had no TED and my eyes have been dry, but they are particularly bad atm. I was told to take selenium post RAI but only for a few weeks, maybe it's something I ask the consultant next week. Two other things which have arisen recently are shortness of breath (GP gave me an inhaler and said I am query asthma!), but I believe it is thyroid related and also borderline cholesterol, again which I believe is thyroid related. These are also on my list of symptoms to talk to the Endo about! Thanks for all the tips
Yes - low thyroid levels - low T3 - breathlessness and cholesterol can go hand in hand as your metabolism is slowed and your body struggling to keep going.
You have little reserves of T4 to convert to T3 and need your T4 up in the top quadrant of it's range before we can assess your T3/T4 conversion.
Breathlessness can also be low iron but I think I saw a ferritin at around 60 /80 - sorry - I can't see that above too clearly - but it has improved greatly so well done - everywhere I researched suggested ferritin needed to be at least over 70 for any thyroid hormone replacement to work.
I haven't really gone into the vitamins and minerals - and just given you my targets - there are better placed people on here than me on which vitamins and minerals are better than others - so am passing on suggesting brands etc.
Just thinking you might be better served having an endocrinologist and eye consultant specialising in thyroid issues working together to get your T3 and T4 balanced :
As I understand things this is what happens in the TED clinics which are throughout the country - generally attached to the large teaching hospital.
if you contact the Thyroid Eye Disease charity they will signpost you to your nearest clinic where and endo and a Grave/thyroid eye specialist liaise together and work with you to find the best treatment option.
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