I am a (normally) fit man of 64 years and have had recurring cases of hyperthryroidism over the years so finally last June I had ablative radioactive iodine treatment to kill my thyroid
Started on 100 mcg levothyroxine gradually increasing to 150mcg until my TSH was 1.63 and T4 was 4.4. However, I felt increasingly unwell- main problem being suffering from ringing/buzzing in ears but also slightly depressed, sometimes very on edge and generally feeling about 60%
After discussion with endocronologist have started on NDT at 1 grain a day. Felt almost immediate improvement but then within 2 days feeling the same symptoms I had when I was hyperthyroidic- very on edge, raised heartrate, headache etc. Have now dropped to half a grain a day but still feeling similar, albeit slightly less.
Any suggestions as to what a normal starting dose is with NDT? Also, anyone out there who has had radioactive iodine treatment that has found a good solution medication wise.
Any help would be greatly appreciated as this is beginning to get me down.
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Pablobiscuit
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Ok I've had RAI for Graves Disease and initially was treated with Levothyroxine - T4 and was fine for a good few years and then became increasingly unwell.
I wasn't able to find a doctor or endocrinologist willing to support me with any other thyroid hormone treatment and so about 18 months ago started to self medicate with NDT and I am doing very well and my mental and cognitive abilities are vastly improved.
I also tried adding some T3 to my T4 thyroid hormone but on balance prefer the Natural Desiccated Thyroid hormone replacement.
Ok - I stopped Levothyroxine 125 mcg one day and started on 1/2 a grain/tablet of NDT. the following day.
Week 2 increased to 3/4 of a grain :
Week 3 added another 1/4 making a total of 1 grain/tablet :
Week 4 went up to 1 + 1/4 grains and so forth and so on :
It is suggested that if you get up to 2 grains/tablets to hold there, wait 6 weeks and have a blood test, just to see where your T3 and T4 are in the range. However these blood tests, ranges and guidelines were introduced in the 1960s to be used alongside Levothyroxine, the newly launched thyroid hormone treatment.
NDT was the successful treatment for hypothyroidism, for over 100 years, prior to the introduction of Levothyroxine, blood tests, ranges and guidelines, and you treat to the relief of symptoms, so your symptoms are relieved as you slowly increase your dosage.
You'll know when you have taken a little too much, I felt anxious and edgy, so the next day I dropped back down to the previous dose, and that is where I have stayed.
I'm on 1 + 1/2 tablets/ grains which I take at around 3 in the morning to dovetail in with the body's natural circadian rhythm.
Your vitamins and minerals, especially ferritin, folate, and vitamins D and B12 all need to be at optimal levels for any thyroid hormone replacement to work effectively.
You might like to take a look at the following book written by a doctor who has hypothyroidism. Barry Durrant - Peatfield writes in an easy to understand manner in his book Your Thyroid and How To Keep It Healthy and though neither of us now have this major gland we do need to know all that it does so we can try and compensate accordingly.
Many thanks for your response- as a matter of interest when you first started on the NDT, even at half a grain, were you getting the symptoms of being anxious/edgy. I believe the T3 in NDT is much more active than the T4 you get in levothyroxine, so might take a bit of time to get used to it?
Well I'd already played around with adding 6.25 T3 to a reduced dose of 100 mcg Levothyroxine, so I knew taking T3 wasn't a problem for me.
T3 is said to be about 4 times more powerful than T4.
You could start at 1/4 grain NDT for the first week, and see how you go - it can take time to " bed in " for some people and considering most NDT is around 38 T4 + 9 T3 per grain that 1/4 only represents around 9 T4 + 2.25 T3 - and a tiny dose :
T4 - Levothyroxine is a storage hormone and it will take around 6 weeks for it to have fully left your body - so will 'carry you through' the first few weeks as you build up the NDT.
With thyroid hormones you need to start low and build very slowly - I don't think anybody would suggest starting on 1 grain as that's the equivalent of about 100 T4 and remember that you still have the T4 build up within your system.
So initially your experience was that of taking about 250 Levothyroxine :
P.S. What did your endo suggest and is this an NHS prescription or have you had to buy it yourself ?
Well, my endo is a bit too casual for my liking- certainly not a rigorous as I would like.
Having said that he did agree to the NDT but wrote a private prescription so I had to pay myself.
He was the one suggesting 1 grain which I took for a few days- felt good to start with but within a couple of days I was feeling distinctly hyper, very on anxious and on edge. Contacted him and he then suggested coming down to half a grain for a week, which I've now done for 4 days. Felt good again for a couple of days, now feeling on edge again but not as bad a before.
Well I think you'll do better listening to people on here than that endo :
So, your feelings of being overdosed will start to drop away now as you stay on 1/2 a grain for one week.
If all ok after the week I'd suggest increasing by a quarter grain taking you up to 3/4 and then stay there for a week, and basically follow what I previously suggested.
Does this dosing arrangement differ too much from the endo's suggestions ?
It is very important that ferritin, folate, B12 and vitamin D are maintained at optimal levels as no thyroid hormone replacement works to full effect if these are just in the range somewhere, and RAI is known to trash vitamins and minerals so it would be in your best interests to get these checked out.
I don't quite understand the blood test numbers you gave in the initial post, giving a T4 reading as 4.4. - as the range for T4 is general around 12 - 22. Could this have been a T3 reading as that range is generally 3.1 - 6.8 and if so do you have the correct T4 reading so we can check your conversion ratio ?
When on any thyroid hormone medication containing T3, your TSH will go down to probably a low, suppressed number, and this doesn't matter, though your endo might disagree.
The TSH was originally introduced as a diagnostic tool to test for hypothyroidism.
Once on any form of thyroid hormone replacement it is the T3 and T4 that need to measured in order to assess your ability to convert the T4 into T3 which is the active thyroid hormone that the body runs on and it is T3 that causes the symptoms of either hyper, or hypo, when either over or under treated for hypothyroidism.
Split the dose ....I was on Armour Thyroid 2 grains and always had to split the dose because of the symptoms you described and "Yes" it worked my issues subsided.
1 grain of NDT is equal - in its effect - to 100mcg of levothyroxine (aprox) and contains all of the hormones a healthy gland would do.
Considering that NDT was introduced in 1892 in the UK with no blood tests but the skill of the doctors who knew all clinical symptoms and patients were given a trial of NDT and slowly dose was gradually increased until patient felt well and relieved of symptoms.
(before that people just died a horrible death I believe)
This is an excerpt from the following link. Strange, isn't it, that even before 1892 some countries acknowledged it could be due to a dysfunctional thyroid and were able to restore patients' health.
"Conceptualising the link between the thyroid and myxoedema"
Extract.
Up to the middle of the 19th century there appears to have been no knowledge of thyroid biology but much speculation. That the thyroid must have some important function was suggested by its very generous blood supply. Some wondered whether it functioned as a vascular shunt to prevent sudden rushes of blood to the brain – a neat idea! Others thought it was involved in voice production by some facilitating, perhaps lubricating, action on the larynx. Indeed, the two thyroid lobes had originally been called the laryngeal glands. But Frederik Ruysch, anatomist in Leyden around 1690, adopted, according to Albrecht von Haller in 1766, the ‘only possible remaining opinion, namely, that a peculiar fluid was elaborated in the gland and poured into the veins’ (Rolleston 1936; Singer and Underwood 1962). The 19th century thus began with thyroidology at best in embryo; but during that century endocrinology was born and the thyroid was its standard bearer.
In 1836, Thomas Wilkinson King of Guys Hospital, regarded by some as the ‘Father of Endocrinology’, anticipated on the basis of observation and experiment the internal secretion of the thyroid. In a meticulous paper on its anatomy, he wondered at the thyroid’s disproportionately large vascular supply in the absence of any evident mechanical or other local function and also at what he described as its ‘peculiar’ fluid (King 1836). He wrote: ‘The most important novel fact concerning the thyroid gland is doubtless this, that its absorbent vessels carry its peculiar secretion to the great veins of the body’. This language is almost identical to that of Ruysch and Haller more than a century earlier. Indeed, King notes that his view ‘has been indirectly surmised by Morgagni [probably in 1761] and others’, usefully acknowledging a continuum in thinking. He goes on to say: ‘Yet we may one day be able to shew [sic], that a particular material principle is slowly formed [in it], and partially kept in reserve [for]important subsequent functions in the course of the circulation.’ "
You will also be able to follow Dr John Lowe's advice (an Adviser to TUK before his accidental death). He was a scientist and researcher in particular for dysfunctional thyroid glands.
It often helps to get vitamins and minerals to optimal levels. So you need to know B12, folate, ferritin and vit D. If taking vit D, you also need to take magnesium and vit K2. If you had Graves disease, you might need a suppressed TSH to feel well. Tinnitus, low mood and anxiety can also be symptoms of undermedication also, so I'd get a full thyroid test (inc FT3 and vitamins and ferritin) - 150mcg of levo down to 1 grain of NDT is a huge drop in meds (about 50%).
Hi pablo
As regards tinnitus, I have had it since 1980, but am no longer bothered by it now.
This is since I learnt to view it in a 'new light'.
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