Hi all, Haven't posted in a while, so here's an update. I had a thyroidectomy 18 months ago, with no RAI due to ongoing saliva issues. Up until about 3 weeks ago I was doing well on 137.5mg Levo, good energy levels and feeling pretty good. Since then I've been lacking energy, feeling a bit down. and generally out of sorts.
I had a blood test anyway this week and the results are below. I did fast the Levo for 24hours, stopped the B complex 4 days before (no biotin) and had the test before 0900am.
My consultant reckons the results are OK (he's Nuclear Medicine not an Endo), he's new to me, he dismissed the tiredness etc and when I asked him what he thought about Vitamins and the thyroid he said he didn't know about them!!! I've been taking 2000 ius Vit D (up from 1000 a week or so ago), Thorne Basic Vit B capsules and a small amount Magnesium in addition to my Bisoprolol, Amlodipine, Clopidogrel, Rosuvastatin and Ranalozine.
I also sent off a Vitamin check to Monitor My Health, but apparently the sample was no good and they're now sending me a replacement kit.
My Conversion T3/T4 seems to be around the 0.19- 0.21 mark over the last year, does this seem a bit low? If so is there anything I can do about it
What do you think ?
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Devonlad
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Well your T4 is running slightly over range and your conversion struggling.
I divide your T4 by your T3 and that works out at 4.59 with most people feeling at their best when they come in this conversion ratio ( 1 / 3.50 - 4.50 - T3/T4 ) at 4 or under.
With ferritin, folate, B12 and vitamin D maintained at optimal levels your conversion may improve a little.
How are the saliva issues - any easier to tolerate ?
Conversion can also be down regulated by inflammation, and on going pain and health issues, physiological stress ( emotional or physical ) depression, dieting and ageing.
Since you haven't a thyroid and lost your own natural thyroid production of T3 - said to be around 10 mcg - you may well benefit from a lower in range T4 and adding in some T3 - Liothyronine.
It's not recommended to run with a high in range, let alone over range, T4 long term and T3 is around 4 times more powerful than T4 so it might suit you better to trial a T3/T4 combo.
The other alternative is to switch to Natural Desiccated Thyroid that contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down into tablets referred to as grains.
You will need a referral to an endocrinologist to be considered for any treatment option other than T4 monotherapy and it has become something of a post code lottery with financial restraint being of greater importance in some CCG/ICB areas than someone's health and well being.
Of course if you can afford to go private the options are greater -
Thyroid UK - the charity who support this forum hold a list of recommended specialists both NHS and private so just contact admin @ Thyroid UK for a copy of this patient to patient list.
If you go into openprescribing.net/analyse you can see by surgery and area how supportive your doctor and hospital are, in the overall scheme of things on the comparison chart.
I think Devon as a county is pretty dire and T3 restricted to 10 mcg a day prescriptions, which may or may not be enough - but that's that :
JaneChapple runs a local support group and now I've highlighted her name Jane will be notified to read and hopefully answer any more local questions you may have.
Many forum members self medicate after being refused any treatment options other than T4 monotherapy - me included.
Hi Pennyannie, Very many thanks for your excellent reply and so quickly. I was up until September 22 on 150mg Levo as the then consultant (who left Plymouth unfortunately) deliberately kept me on a high levo dose to reduce likelihood of cancer cells growing (I opted not to have RAI as I have dry mouth/low saliva issues and this might have aggravated it). I wasn't too good on 150mg so we opted for 137.5 which I was good on until 3 weeks or so ago, I do also have some discomfort in my right armpit which is a new thing which might affect the conversion I suppose.
I don't know whether the new consultant I have is amenable to T3 or even referring me to an Endo as I've only had a 5 minute Zoom call and a short email. It will be very useful to hear from JaneChapple and thank you for that, I am prepared to explore any route to find the best solution to improve things. It does seem as if I need to change something either add in a bit of T3 or maybe lower my Levo (which I've tried before, but without the the vitamins), but I don't want to compromise any chance of the papillary cancer growing (though it was found purely by accident, I had no symptoms and it hadn't spread to my lymph nodes).
Thanks for the links you sent I'll do some more investigating.
T3 automatically lowers / suppresses the TSH anyway so don't worry about a lower T4 increasing the TSH - if it's suggested introducing a small dose of T3 alongside a lower dose of T4.
Yes, after a thyroidectomy for cancer the TSH must be kept suppressed to stop any further cell mutation.
I think you should get this right armpit checked out - it's playing on your mind - so best to be safe rather than sorry.
Just wish the same dictate were used after RAI thyroid ablation for Graves Disease and the TSH not used as the sole barometer of thyroid function.
Ok - so hope Jane picks you up and can give you the low down on how things work or don't in Devon.
Juust seen this )enny and responded to Devonlad. YesDevon still dire. Someone in my group has recently been turned down for an increase from 10 to 20mcg so I will stand no chance of 40mcg once 3 month trial is over?! Devon ICB prefer to do 3 hr meetings on line with 20 senior management team which do absolutely nothing to help thyroid patients or any patients for that matter! They do these 3 hr meetings once a month and get paid about £11K on top of their salaries?! It includes people like the Chief Nurse at RD&E, who Id have thought could not spare 3 hrs a month in the first place. I listened to one but had to skip quite a bit, it was so boring😋
Bearing in mind there are 42 ICBs accross the country, imagine the expenses they claim?!
Its an absolute disgrace!
As you can probably tell Im not best pleased!😁😁😁😎❤
Isn't the TSH supposed to be kept low to keep the chance of cancer reappearing as low as possible? I seem to have had mixed messages from the consultants so am somewhat confused.
Thank you everyone for your excellent advice, I'm very tempted to try reducing my T4 to 125mg every other day and keep the 137.5 for the rest. It's strange how I was doing really well for 3 months and then started feeling rubbish, but I guess that's the way it is with the thyroid (or lack of).
I'll certainly try contacting JaneChapple and see what the options are locally as I don't think I'm now getting the best advice round here.
I'm currently on the following supplements Thorne Basic B complex capsule, 2.000 IUs Vit D, and 100 mg Magnesium citrate. Up to 2 weeks ago part of the Vitamin D I took was Nature Provides Vit D3 + K2 (3 drops only), but I stopped that in case it was this causing my tiredness etc (though I think highly unlikely).
Interesting that your amounts are that high. The last Vitamin D test I did in September when on 1,000 IUs was 90 on a Range of 75-200 nmol/L which on reflection is not very high. Hopefully I'll get the replacement kit from MMH any day now.
Do you think I still need to stop the Thorne Basic B complex 3 or 4 days before test due to the Biotin in it or can I get away with keep taking it?
That's a great idea taking B12 & methyl folate, I hadn't thought of that!! I already have some 1,000 mcg B12, but no methyl folate. I've just checked my folate level from September and it was 18.1 on a range of 8.83-60.8nmol/L so pretty low as well. Do you have any recommendations as to make or size as I'll get some in asap, prior to my test. Very many thanks for your patience in helping me I really appreciate it.
Do you have Euthyral available in UK? It's a T4 T3 combo 100/20 Micrograms. That's the only dose made, it's by Merck and costs the French health service under 4 euros for 50 tablets. I got my GP to prescribe it, I've got him well trained. I find six tablets a week works for me.
I have heard a few people get some dispensed as a 'special' but it is difficult to get a prescription and most pharmacies don't want to know - and it is much more expensive in the UK.
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