Really hoping for some ideas because just had my latest blood test results and it wasn't what I was expecting.
I went from 137mg to 150mg at the start of November and from about 2 weeks ago i started to feel like maybe I was slightly overmedicated (slightly tight chest / anxious feeling in the evening). Although i do feel very tired in the evening / go to bed early & wake up normal time - I def need more energy but had been putting that down to low iron levels.
However, my Dec results are back (tested 16 Dec) and TSH is up, fT4 down and fT3 is not looking that great.
I follow all the advice on here around taking thyroxine away from food and supplements, moving it around so its 24 hours before a morning blood draw (i take thyroxine at night), all blood drawn at 7am fasting etc.
Any thoughts on what I should be doing with my meds? Should I look to stay on same level, or try and go private now with the purpose of trying T3? I assume i don't really want to go back down to my previous dose?
TIA x
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I am gluten free but not strict. Will be getting antibodies checked soon to assess that situation.
No I know, and working with a functional doctor she’s recommended increasing my iron in my diet so I’m going to stop iron tablets and be making chicken liver pate.
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Just been reading all the links, the one from oatext is particularly interesting. I’ve made lots of notes haha.
Where it says the max dose is 400mg - is that tablet size or elemental iron dose. My tablets of ferrograd are 325mg but 105g elemental iron.
Just wondering if I could take 2 a day. Although dose on box says max 1.
Really helpful in terms of aim of getting to 100 and understanding haemoglobin.
I can see the Hb has gone up a bit but not lots so wondering if I can up dosage. I can tolerate the tablets quite well I think. I do get constipation but it’s not awful.
Also said in one article about stopping iron supplements 10 hours /2 days before blood tests but I’ve been doing 7 days. What do you think about that? It seems quite a long time I’m not taking iron so if can get away with 2 days I’d like to change to that.
Hello humanbean just wondering if I might ask you about this as I've just had another blood test and my level is now 28 so it really isn't going up much. I have read the articles about how it can take a very long time to increase but i am just wanting to do the most I can to support an increase, but safely.
Where it says in one article that the max dose for iron is 400mg - is that tablet size or elemental iron dose. My tablets of ferrograd are 325mg but 105g elemental iron. I have been taking 1 of those a day (although now run out) along with 100mg from Iron bisglycinate (thorne brand, 25mg per tablet). But as I said its just ticked up 1 to 28.
My Iron bisglycinate are in 25mg. If i get a new prescription can I continue to take as above, or could I go even higher do you think? Or if iron bisglycinate is better absorbed shall i take 400mg of them? that would be 16 tablets a day which maybe seems excessive...?
Also is it better to split the dose in the day or take all at once?
I also am making chicken liver pate and eating lots of steak!!
Well, I think in the first instance you need to work on your vitamins and minerals as no thyroid hormone works well if these are not maintained at optimal levels :
Through trial and error I now know I need my ferritin at around 100 : my vitamin D at around 100 : with serum B12 around 500+ and folate around 20 :
I don't think keep increasing T4 is the answer as your T3 hasn't moved much over these past months despite the increases in Levothyroxine and since your have had RAI your feedback loop is broken. It is imperative therefore that you are not dosed by a TSH reading as in Graves patients especially the TSH read is known to be an unreliable measure of anything due to possible antibody attachment on the TSH receptors.
Ideally you need to be dosed on T3 and T4 blood test results with a view that both these vital hormones need to be balanced and in a ratio of around 1 / 3.50-4.50 : T3 /T4 : and to find your conversion ratio while on Levothyroxine you simply divide your T3 result into your T4 result. If your conversion of T4 into T3 comes in wider than this ratio it's even more evidence that you need to introduce T3 with a possible lower dose of T4.
Personally I think you would benefit by introducing some T3 along with a lower dose of T4 :
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus approximately 10 T3 and 100 T4 : Liothyronine - synthetic T3 is about 4 times more powerful than T4 and the active hormone that the body runs on and I read the average person utilises about 50 T3 daily just to function.
Some people can get by on T4 only : some people simply stop converting T4 into T3 at some point in time and some people simply need both these vital hormones dosed and monitored independently to bring them into balance and to a high enough level acceptable to patient and restoring wellbeing.
As you will see from the above you have lost around 20% of your overall wellbeing by not restoring both T3 and T4 levels, and it's a bit like not having your pilot light lit.
A fully functioning working thyroid would be kick starting your metabolism because of it' s own supply of T3 - which you have lost. The thyroid is your body's engine and the conductor of your body's orchestra including your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
I have Graves and post RAI in 2005 and became unwell in around 2014. I was refused Natural Desiccated Thyroid when I asked my doctor, but given anti depressants. I struggled on, as you do, and became very unwell and after over 2 years on a NHS not so merry, merry go round I was discharged with " just a low ferritin " : I asked to be referred to an endocrinologist and in early 2018 refused a trial of T3 owing to my low suppressed TSH.
I then purchased both T3 and NDT for myself and have been self medicating and am now so much better choosing to stay on NDT to manage my lingering Graves, thyroid eye disease and hypothyroidism.
I know I've written to you before, and sorry if I'm sounding like a broken record - so delete bits and add bits, and hopefully overall, it all makes some sense and is of help.
Yes hi again, you have definitely written to me before. Thank you for doing so again. That was really insightful. I know I definitely need to get my ferritin up and also my folate so I guess I’ll keep working on those levels and then see if I can see a t3 friendly endo.
If I don’t get anywhere with that route I may have to come back for tips on going down the self prescribing route.
I don’t really want to increase my levo as I agree the t3 hasn’t really moved at all despite doubling T4 dose. And I do feel tight in my chest most evenings. It’s unpleasant and makes me feel on edge. Maybe my TSH will never get a normal read out then according to your referring there to the broken feedback loop. I didn’t know that could happen with RAI. There is so much to learn.
I would think the " tightness in your chest " maybe too much unconverted T4 :
If you haven't read Professor Toft's 2017 article " Thyroid Hormone Replacement - A Counterblast To Guidelines " you can find the full piece on here : it is very interesting in that it relates to where we all are in this thyroid mess of mismanagement.
Having Graves Disease and having had RAI seems to compounds the health issues.
Primary hypothyroidism caused by RAI is known to be more " challenging " to treat ;
RAI is known to trash vitamins and minerals :
You need strong core strength for any thyroid hormone replacement to work so this is the first thing that needs to be rectified and you may find your needing to do this for yourself as you may well be in the NHS ranges, but ranges are just that, a guideline from which a prescription maybe forthcoming.
I found after RAI I couldn't tolerate the tablets prescribed so resorted to eating so much liver plus Spatone and Solgar Gentle Iron that I had to buy for myself.
Yes all four vitamins as stated above need to be optimal for a strong core :
If you felt better on the lower dose of T4 drop back down, or maybe cut the tablet in half and just drop by 12.50 mcg and try that first :
When I started self medicating my first plan was to dose up my T4 - I became unwell when I went up to 150 mcg : so plan 1 was discounted as it didn't improve anything :
SlowDragon has given you a multitude of relevant information to read through :
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