My levo was increased to 125mcg at the end of November 2020. The change was dramatic, no more balance issues, brain fog lifted, more energy. During that time my t4 went as high as 24 but has since dropped slightly. I can feel there has been a change physically since then.
At my recent review the nurse wanted me to lower my dose back to 100mcg or at least alternate with the 125mcg. I told her I wasn’t happy to do this as I was so much better on the higher dose. She’s referring back to the consultant.
TSH 1.77. 0.27-4.2
T4. 23. 12-22
T3. 4.64. 3.1-6.8. (Medicheck)
I mentioned Dr Toft and his comments regarding T4 and T3. Was I right to do this and what do you lovely people think about my results and the possible reduction of levo dosage?
I would welcome any comments as I have a poor relationship with the consultant and am losing trust in him.
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Roulette26
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I mentioned Dr Toft and his comments regarding T4 and T3. Was I right to do this
Absolutely right. No reason not to, he is a leading endocrinologist.
TSH 1.77. 0.27-4.2
T4. 23. 12-22
T3. 4.64. 3.1-6.8. (Medicheck)
TSH is still a bit high considering your FT4 level.
It would appear that you need TSH over range to achieve even a modest FT3 level of 41.62%. I would think you need slightly less Levo plus the addition some T3. Dr Toft has recently written a new article which says that T3 may be helpful for many patients:
….It is instructive to consider the history of thyroid hormone replacement in order to appreciate that many of our policies have, to some extent, been accidental rather than planned.
Thyroid extract was first used some 125 years ago with good effect and remained in widespread use until the 1950s when a suitable synthetic LT4 preparation gradually supplanted it. The doses employed were 200–400 μg daily.
Although T3 was discovered as the second thyroid hormone in 1952 it was not used to any extent therapeutically as patients seemed content with LT4 alone, long before the demonstration that circulating T3 was largely derived from deiodination of extrathyroidal T4.
The seismic shift in the treatment of hypothyroidism, however, was the result of the development of sensitive assays for TSH which showed that, in order to restore serum TSH to normal, the dose of LT4 required was of the order of 75–150 μg daily. Higher doses caused suppression of TSH consistent with hyperthyroidism. The resultant dose reductions were tolerated by the majority of patients but this was the beginning of significant dissatisfaction with adequacy of the recommended treatment of primary hypothyroidism which remains problematic today. The previously high doses of LT4 would, by the law of mass action, have overcome any impaired D2 activity in affected patients.
Little attention has been given to a study, important in retrospect, which showed that it was difficult to increase serum T3 into the hyperthyroid range with LT4 unless serum free T4 concentrations were markedly elevated at around 35–40 pmol/l. This was an elegant demonstration that exogenous subclinical hyperthyroidism was a different entity from endogenous subclinical hyperthyroidism, even although serum TSH was suppressed in both conditions. In other words, a low serum TSH concentration in patients taking LT4 did not necessarily indicate overtreatment.
In short, what he is saying is that for Levothyroxine to be effective, the patient needs a dosage between 200 and 400 mcg daily. But since the focus of the medical profession had shifted to the TSH, the medical profession has erroneously decided that the TSH has priority over the wellbeing of the patient..... But read the whole article
Thanks seaside Susie, as usual very helpful and informative. Unfortunately my consultant will not test T3 therefore I’ve nowhere else to go. He looks at the TSH and T4 only, doesn’t take into account how the patient is feeling. There isn’t a sympathetic endo near me, and obviously travelling is out of the question.
They couldn’t complete the tsh., did offer to send a replacement kit but it wouldn’t have arrived in time. The T4 was basically the same as the hospital result. I try to do my own Independent blood check before my appointment with the nurse so I’m prepared. Also I’m continuing to monitor my ferritin, 342 and rising, the locum GP informed me 319 ( range 13-150 ug/L) was normal. I was informed by another contributor that it can be as high as 400 in post menopausal women.
Yes, been supplementing vit D. Lowered vit C dose, was taking 2000 mg per day + 15mg zinc, because of raised ferritin. The new lab Medicheck used has a completely different set of ranges so difficult to see if serum folate has dropped, although looks low. How do I raise it?
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I find it deeply concerning that your consultant doesn't even test your T3 :
Is this someone with any endocrinology knowledge or a diabetes specialist ?
I was in a similar situation with an over range T4 but a higher, better for me T3 ( 4.50 ) but told I was overmedicated and needed a dose reduction in T4 - and because my TSH was at 0.01 - I was refused a trial of T3 - which was the reason for the appointment.
Your TSH is still high and in the acceptable range, so you maybe more lucky when you see this medical professional as the obvious solution is to add a little T3 and drop some T4 and thereby bring both T3 and T4 thyroid hormones into balance.
The acceptable conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 - T3 to T4 :
with most people preferring to be at 4 or under :
So if you divide your T3 into your T4 you get 4,95 - proving poor conversion.
You have had RAI thyroid ablation and your feedback loop is broken - the conventional thinking and HPT axis doesn't work any more and you need to be dosed and monitored on T3 and T4 blood test results :
Your have lost your own thyroid T3 production which is said to be about 10 mcg a day and it is very likely, all or more than you'll need, to restore your health and well being.
I know I've written all this, and more, to you before and sorry if I sound like a broken record.
The Professor Toft article linked by SS is so relevant to all of us but especially you and me as we have both had RAI which he refers to on Page 3 in the top third of the first paragraph :
I have given up trying to get the appropriate help as challenging " the system " simply exacerbated my symptoms and made me more unwell, so now I've resorted to DIY :
I started trialling a little T3 to a lowered dose of T4 and that worked :
I then trialled Natural Desiccated Thyroid and found it softer on my body and that is where I am now, 2 years on, and counting and so much better,
Hi pennyannie, I haven’t been ignoring you just taking my time digesting your post. Neither of the endo’s are really interested in the thyroid. One offered me carbimazole or regular testing , I opted for the latter. 18 months later my GP prescribed it. 4 months later my my new endo told me I’d gone on to it too soon, and was quite rude and dismissive of any questions. The only info I got was a copy of a page, at every appointment, from the British thyroid association. He will only test T4 & TSH. I haven’t spoken with him since April, all my phone consultations are with an endo specialist nurse. At least she listens to me.
You said you’re self medicating T3, are you in the U.K., can you get it without a prescription?
Thanks for reminding me about how to calculate the conversion, I thought my T3 at 4.64 was higher through the range.
Well in SS reply to you she has given your T3 % through the range as 41..6% : Is this what you are questioning or thought higher ?
I was talking conversion ratio which is something different - sorry - have I confused you ?
Yes I have a few of these leaflets and one suggested for TED that I could grow a fringe?
I'm sorry your treatment seems to be lacking - I think it depends on your CCG area and the restrictions some hospitals seem to be working under - but in all seriousness how can an endocrinologist not run a T3 blood test, and profess to care for his patients.
There are several synthetic thyroid hormone replacements : T3. T4, T3/T4 combos in 1 tablet form, and one form commonly referred to as NDT which is Natural Desiccated Thyroid and if you lived in most other countries in the western world you would be offered alternatives and options that do not seem readily available in the UK on the NHS.
Natural Desiccated Thyroid was used successfully for over 100 years to treat hypothyroidism prior to Big Pharma launching as a business in the 1960's and introducing synthetic drugs, along with the blood tests, guidelines and ranges that doctors now seem welded to.
NDT is pig thyroid dried and ground down into tablets referred to as grains.
Each grain contains all the same known hormones as that of the human gland, namely, trace elements of T1, T2 and calcitonin plus a measure of T3 and T4 :
You can buy both T3 and NDT without a prescription through sites on the Internet :
You can buy T3 and NDT through a private prescription through UK pharmacies as listed on the Thyroid uk website where you will also find details, through emailing Thyroid uk and being sent, a list of sympathetic endocrinologists and specialists both NHS and private where you may well get the support you rightly deserve as your NHS service appears to be failing you.
So, in the first instance, get the list from Thyroid uk and see if there are any doctors, specialist on the list that you can get to see - then ask your doctor for a second opinion and advise him of who you want to be referred to :
If you have the money, obviously you'll have more choice and options open to you.
I couldn't get any help and challenging the NHS system exacerbated my symptoms so decided to buy my own thyroid hormone replacements and have gone my own way, and am much improved and with much less stress.
I'm one of these people. Higher TSH with higher T4 levels. I had to get my T4 up around 25 to get T3 into 70% range, which put my TSH around 1.3. I never felt abnormal or over medicated.
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More or less?
T3 taken away, looking for a new source please :)
Please can anyone help with my latest blood results
So over the NHS approach to treating thyroid disorder. What are my options now please?
END OF ROAD WITH NHS
