Please could you lovely lot have a look at my latest blood results😊.TSH 0.06 (0.35-4.94)
Free T4 18.9 (9.01-19.05)
Free T3 3.3 (2.63-5.70)
Had a thyroidectomy due to Graves Disease 4 years ago. I’m on 125 mcg Levothyroxine daily. Never felt 100% since diagnosis. Feel fatigued, weight gain, aches and pains but am 52 so not sure if hormones are playing a part too. GP wants to reduce dose, yet again, which I will refuse. Would I be a candidate for T3?(have no idea/knowledge about this or what is optimal). Many thanks in advance xx
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Thanks for replying SlowDragon. My blood was taken at 9.00am and just had water. I did have coeliac test done a while ago which was negative. I am not on a gluten free diet. I remember my Vitamin D being ok but can’t see when it was last tested. In Nov 21 my ferritin was 42 ng/ml (31-20.5). Aug 21 my folate was 4.1 (3.1-20.5) and B12 was 305 (187-883). I was taking Thorne B12 but stop taking this about a year ago (stupid I know🙈) but was worried I might have too much of it. I know my ferritin is low but don’t quite know what to take for this, it’s complicated, as I understand, same as my folate. I do try and each foods high in iron too. Gp wants to speak to me re low TSH result so will ask if I can see endocrinologist. Do you think I would be eligible to be referred? You reminded me that I have actually got one near me from the tuk list. Thanks once again for your valuable advice.
Sorry, that’s my mistake ferritin range (20-204), blame brain fog 😂. And folate (3.1-20.5) BT is short for blood test, should have been clearer, used to be a medical secretary, in my younger days x
cks.nice.org.uk/topics/anae...In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
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.
Thyroid disease is as much about optimising vitamins as thyroid hormones
I've just looked back and see i replied to you initially some 3 years ago !!
So my thoughts haven't changed and you must not be dosed on a TSH blood test but on your T3 and T4 levels with a view to have them in balance at around a 1/4 ratio - T3 to T4:
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4. 50 T3 / T4 : with most people feeling at their best when they come in at around 4 or under :
So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at around 5.72 - so your conversion is very poor.
Conversion can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing.
However since you have Graves and are post a thyroidectomy the most obvious reason for your poor conversion is the fact your own T3 thyroid hormone has been lost through surgery and not replaced, which will automatically reduce your health and well being, and everything falls down like a house made of cards.
Some people can get by on T4 only :
Some people find that T4 seems to be less effective overtime, and need the addition of a little T3 to replace their own lost T3 thyroid hormone through surgery, ablation, or AI disease making a T3/T4 combo ;
Some people can't tolerate T4 and need to take T3 - Liothyronine - only.
Some people find that Natural Desiccated Thyroid suits them best as it contains all the same known hormones as that of the human gland.
I think you need to ensure your vitamins and minerals are optimal, as when metabolism is reduced you will have trouble extracting your key nutrients through food, no matter how clean and well you eat, and you need a strong core of ferritin, folate, B12 and vitamin D for any thyroid hormone replacement to work effectively you need a strong core.
I would refuse any more dose reductions in T4 and ask for a referral to endocrinology.
In primary care doctors can only prescribe T4 and you don't need that but T3 - Liothyronine to replace that lost when your thyroid was surgically removed.
I'm afraid it is still a post code lottery and down to your local CCG as to how they interpret the guidelines. You ca go into openprescribing.net and then analyse and see by your CCG and surgery how active they are in writing T3 prescriptions
I would obtain the list of recommended specialists from Thyroid UK and see if there is anyone in travelling distance that you may like to consider going to privately and ask for current feedback on here, before wasting more time and money.
Thanks so much for your information again. I just keep plodding on over the years but I do feel that, as time goes on, the T4 is less effective, maybe. There is an nhs endocrinologist near me, which i got from the tuk list. When I speak to the gp I will get referred to them. So fed up of having the same conversations again and again and not getting anywhere. Now all my symptoms are blamed on my age being 52! (Doesn’t help I know!). I know my vitamins need sorting but to actually phone the gp and get them to do them, is a job in itself. I did do them privately once but had such a job doing the finger prick test, it’s put me off for life 🙈. I will follow slowdragons advice too and restart the B12 and eat iron enriched foods too in the meantime. Thanks once again 😊
I was allowed to run with a low suppressed THS until I hit 65 and then my T4 was cut back and there was absolutely no discussion for 2 years while I became more and more ill :
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1 T2 and calcitonin plus a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
T4 is inert and a storage hormone and needs to be converted by you bod into T3 the active hormone that runs the body and T3 is said to be around 4 times more powerful than T4 :
You have no natural T3 circulating in your body to kick start the conversion of the T4 and you need to replace your T3 thyroid hormone and that needs an endocrinologist who understands thyroid and not a diabetes specialist.
My doctor refused to run a T3 and T4 for me and asked why I also needed the vitamins and minerals - so after 2 years of worsening symptoms and 2 years of various O/P appointments with no conclusions other than a low ferritin and referred to as a conundrum I took things into my own hands.
You can arrange a private blood test and either go to a clinic or have a nurse visit you at home to draw the blood - I chose the later as I was too ill by then and virtually housebound.
Wow! You are so knowledgeable. How terrible that you had to get so ill and treat yourself, unbelievable. I read your profile, so now you are on NDT? How are you feeling now ? Did you try T3?I didn’t realise you can get a nurse to the house to take blood, thanks for that. Can’t believe the gp agreed to test T3, will see what she says when I speak to her x
Well I read a couple of books, which I recommended to you on a previous post and really had nothing to loose but to do it myself after I was refused both T3 and NDT by the only hospital in my county and too ill to travel further afield.
Yes I think both Blue Horizon and Medichecks can arrange a nurse home visit - dependent on where you live in the country.
I decided to try both options and started with a T3 / T4 combo but felt a little turbo charged and had trouble sourcing the same brand which suited me and then I tried NDT which I found much better and it feels softer on my body.
I'm now around 4 years into self medication and actually relieved I don't need to see the doctor at all.
I advised the surgery of my actions and said i would be available for the yearly thyroid function test providing a T3 and T4 were run -
I never received a reply to any letters but around a year later T4 disappeared from my prescription, which now is just for eye drops for the thyroid eye disease I developed after RAI treatment.
I’m glad you are feeling better. It must be lovely not to go through the gp! I must admit, i would be scared to take things into my own hands but you sound like you had no choice. No doubt I will be asking for more help on here soon. Thank you for sharing your story x
The book - Your Thyroid and How To Keep It Healthy is written for patients so it's not too challenging and Barry Durrant - Peatfield writes in an easy to understand manner :
I would write and recite chunks I thought relevant as I'm dyslexic and my brain fog and cognitive function were a real challenge - I did think that I was likely dealing with
early onset dementia - but the ice cold feet and hands told me it was also hypothyroidism.
Once I added in some T3 my brain switched on, it was literally like one of those light bulb moments and then I knew I had made the right decision for me.
You need to do what's right for you and you will know when that it is, as I too thought the doctor must know what is best for me and now just wished I'd jumped ship sooner and in fact never had RAI thyroid ablation but there you go.
Thanks pennyannie, I will look for the book😊 oh my goodness, my hands and feet are always cold! My husband is always commenting on my hands! I’ve also started to get terrible debilitating migraines which am wondering could be also caused by this too? Think it’s definitely time to get sorted. I did feel awful with Graves’ disease before I had it removed so feel I didn’t really have a choice x
I'm so sorry for the delay in replying but my laptop crashed last Thursday and I'm just catching up : and truly sorry for your continued health issues.
pennyannie this is so very interesting for me. I had thyroidectomy many years ago and my latest lab results are with my dose 125 mcg T4 and 10mcg T3.FT4 - 1.5 (0.8-1.6 ng/mL)
FT3 - 3.02 ( 2.30-4.20pg/mL)
If I'm understanding you correctly I divide 3.02 by 1.5 =2.0 ?
If that's correct my conversion factor is very poor.
FT4 and FT3 have to be the same unit of measurement to be able to do the maths.
For example (using the units of measurements typically used here in the UK):
FT4: 20.3pmol/L (12-22)
FT3: 5.83pmol/L (3.1-6.8)
To find conversion ratio you'd divide FT4 by FT3
20.3 divided by 5.83 = 3.48
BUT you can only do this if on Levothyroxine only. Once T3 is added you cannot find out your conversion ratio because you are taking exogenous T3 so there's no way you can find your natural conversion ratio.
Now I understand . Thank You So Much For clarifying it to me SeasideSusie. Being in the States we have different lab results and ranges. It's interesting how in UK and I assume other countries too use totally other lab calculations than we in the States. It can vary a bit too from one lab and another but very minuscule.
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.0 T3 / T4 : with most people feeling at their best when they come in at around 4 or under :
Thank you - I've been meaning to say Thank you - since last Thursday - but my laptop crashed and I have now just had to start off from scratch again with everything ;
The majority of GPs know little about how to treat their patients who're hypothyroid.
The majority seem to think that all of us who're hypo have suddently become overactive just by looking at the result of the TSH alone especially if it is very low.
The least the doctor could do is prescribe T3 to be added to your T4 as you have no thyroid gland thus no thyroid hormones at all.
I have my thyroid gland and could only relieve all of my clinical symptoms by taking T3 alone. It is difficult to get T3 prescribed for some silly reason.
Yes I think the only way is to get the hrt, then try to ensure your thyroid and vitamins are high in ranges and if you’re still not great, it must be something else!
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