Ive posted previously and you've all been extremely helpful.
Long story short.... I had a totle thyroidectomy in 2006 due to thyroid cancer. Im a 57 year old male builder. Was put on 200mcg thyroxin until november last year when it was reduced to 175 then 150 in April. This was due to my TSH levels being 0.01 and T4 being 35. I eventually got an Endo appointment and they said that they now dont suppress TSH for more than 10 years and needed to bring my TSH up. This hasn't happened and now they are not going to do it anymore saying that ive been fine up till now so will leave everything as it is except they've reduced my Thyroxin by 50mcg which has left me feeling really tired and lethargic unable to lose weight. My endocrinologist is prepared to prescribe T3 (one of only 2 in my area that does) but says my T3 levels are fine so declined.
My questions are does anyone else no about the "10 Year" initiative?
Why hasn't my TSH increased and/or my T4 drastically reduced?
And what supplements can i take to decrease my lethargy and extreme tiredness?
My last set of results are as follows:
TSH 0.02
T4 25.2
THYROGLOBIN (cancer marker) 0.08
B12 355 within range
FOLATE 4.7 Low range (4 to 27)
FERRITIN 155 low range (30 to 400)
VIT D 67 Low range (25 to 300)
T3 5.1 within range.
Any help advice appreciated especially supplements!! I currently take a "Greens Powder" and apple cider gummies as im desperate to boost my energy.
Thanks in advance
Written by
wolthebuilder
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Well, I disagree with your endo. Your FT3 is not at a good level, it's too low. And that's why you're fatigued. Probably also why your FT4 is still too high, because you don't convert it very well to T3.
That said, how long was the gap between your last dose of levo and the blood draw? What time was the blood draw?
TSH is lowest around midday, highest before 9 am. But if your TSH has been suppressed for over 10 years, it might never rise again, because the HPT axis has become down-graded. But, that's ok. You don't need it. And endos fussing about low TSHs are a perpetual pain in the whatsit! Don't allow him to reduce your levo so far that it makes you ill, and do say you've changed your mind about the T3, because that could change your life.
hi Grey Goose. Thanks for the reply. I was never given the choice about T3 he just said I didn’t need it. I would gladly take it. I may have to get my own.
That's weird. You obviously need it. You cannot continue to keep your FT4 so high, it's not good for you. But, if you reduce your levo to get your FT4 back down to where it should be - i.e. not higher than 80% through the range - you FT3 will be in your socks!
Maybe that's what you should do! Then maybe he'll take notice and prescribe some T3.
Long-term high FT4 puts you at risk of other problems, like cancer and heart problems. Doesn't he know that?
If you lowered your T4 dose and added some T3, it would lowere the the FT4, yes. But not NDT, that is mainly T4 with a small amount of T3.
Or, you could stop the levo completely and replace it with NDT, which contains approx. 38 mcg T4 and 9 mcg T4 per grain. You'd probably need about 2 grains.
i know of one place to maybe get NDT as i just enquired myself but across teh board i think it could be hard a lot of people send abroad, i cant write on the main but i can on private message. its not cheap either. a really good naturopath or homepath may help.
NDT is very expensive and usually has to be imported, unless you can get it on private prescription. You might be better adding some T3 as its much cheaper and you can self source it.
You can buy T3 and NDT from Roseway Labs in London if you have a private prescription for them. And they conveniently have a prescribing doctor working for them who you can have a phone consultation with for less than £40. It's a great service. No worries about buying and importing from abroad then and you have another doctor at least look at your results and talk to you about what you want to try.
I don't even live in the UK, and always smile when I see this Roseway Labs information posted. Happy that that option exists for you all, given the climate of most of your NHS outcomes for sourcing what you need.
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
Please be aware that this group has scammers lurking that may send you a personal message with where to buy NDT.
⚠️ IMPORTANT! When you receive a message with a recommendation, please do not assume it is genuine!
Scammers are joining the forum on a very regular basis and messaging members with their assertions that they have successfully purchased xyz medication from zyx source.
Once you have what you think may be a genuine recommendation, you are strongly encouraged to message an Admin to ask whether the admin team have any feedback on the source you've been given.
⚠️ Don't part with your much needed money until you are as sure as you can be that the source is genuine.
I have just sent you a private message where I buy T3 from as I've just seen the post about scammers I thought I had better let you know I am a genuine member.
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Hi again! Sorry for being a nag... Ive now got Folate tabs, VIT D spray and B12 tabs... what would you suggest i start with and in what order please? Im going to try and go down the T3 route as well to try and get a better balance and to hopefully reduce my T4 level (as the Endo didn't seem to be able to do it). Thanks again.
2 weeks after starting vitamin D look at starting daily B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
So with your T3 in the range at 5.10 - ( what's the range please ) and your T4 at 25.20 - likely out of the range ?? - you are considered to have enough T3 and do not qualify for a T3 prescription -
though your health and well being have not been restored to your previous levels prior to surgery - and that is of no concern for the endocrinologist and s/he is not prepared to help you get back to where you were, employed, working, and having a life.
It really is disconcerting though experienced similar myself.
The accepted conversion ratio is said to be 1 - 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in this little ratio at 4 or under :
So if I divide your T4 by your T3 I'm getting your conversion coming in at 4.94 so slightly wide of centre and showing your conversion struggling.
Since you have lost your own natural T3 thyroid hormone production it just makes sense to take away this permanent strain on your body, and drop a little T4 and add a little T3 into the mix thereby balancing both thyroid hormones within the range and restore health and well being with the T3 kick starting your metabolism.
I now aim for a ferritin at around 100 ( I'm a woman - you'll need yours higher at around 50% through this range ) folate around 20 - active B12 125 - ( serum B12 500 ++ ) and vitamin D around 125.
I don't know about Greens Powders and guess the gummies are for low stomach acid - I take the ACV in water before my main meal.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -
with T3 known to be around 4 times more powerful than T4.
Some people can get by on T4 monotherapy.
Others find T4 seems to stop working as well as it once did and that by adding in a little T3 - probably at a similar dose to that their thyroid once supported them with they are able to restore health, well being and hormonal balance.
Some can't tolerate T4 and need to take T3 only - Liothyroine.
Whilst others find Natural Desiccated Thyroid restores health and well being and this is derived from pig thyroids, dried and ground down into tablets referred to as grains with each grain containing all the same known hormones as that of the human thyroid gland.
Desiccated thyroid is the original treatment for hypothyroidism used successfully for over 100 years and on the back of which Big Pharma launched the synthetic T3 / T4 treatment options.
At the turn of the century your doctor had all these treatment options in his box of tricks and they were readily available if T4 the cheapest option did not restore health and well being.
Now we face a post code lottery - and many forum members face many brick walls and end up doing it for themselves.
I think I've said all this before - I think you also know of openprescribing.net where you can see by surgery and ICB/CCG area what you are up against.
Obviously if you go private all treatment options are there for you -
Thyroid Uk - thyroiduk.org hold a list of patient to patient recommended thyroid specialists and endos both NHS and private - it's a start, and you still should do your own research and ask forum members here for feedback on anyone you think of seeing.
Roseway Pharmacy now offer a consult and prescribing service - but wonder if you would prefer to actually have a specialist face to face appointment and initially more guidance until you feel more confident and more able to go it alone ?
For me, having low folate is what makes me crazy tired. Buy online super strength tablets (not 400 mcg) and take up to 5000 mcg a day (written as 5mg ie not mcg). I’m taking 2000mcg a day at the moment and seeing instant reduction in tiredness.
Other thing I’ve found is that big changes in levothyroxine take 6 months or more to show on blood test results so ask to go back up and do the reductions much slower.
When talking to Dr - they really want to keep you in work so state you’re really unable to work and desperately need to so absolutely have Togo back up a bit on the dose.
That all said, you were way over range so you will need a reduction in dose - agree with Dr on that - but say just need to take it much slower.
As you havent posted the ranges I am using some guess work. Your B12 looks like it might be lowish. You need to get your folate, ferritin and vitmain d up so supplement with those to start off with. I have messaged you about possible sources of NDT.
hi wol, i am a genuine member here, greygoose and slowdragon will confirm.
i sent you a private message of where you may get NDT but i agree with many answers below and perhaps obtain the list of private doctors first, they can give you advice that you wont get elsewhere, endocrine has so many pathways to follow and you need to be careful.
I see there are other replies re your levels and vitamins etc. And yes it is current thinking to reduce suppression after 10 years as the risk of cancer is seen as low. Just make sure that your Thyrogloblin is tested at least once a year to keep an eye on it. I have found that my TSH, whilst it has risen a little, remains low despite reducing Thyroxine but no one seems too concerned and I certainly wouldn't agree to further reduction. I have however had a bone and heart scan as these are said to be complications of suppression although, not everyone agrees.
I personally find that Vit. D makes an enormous difference to how I feel particularly in winter and your level is rather low.
I would get your folate and B12 up. Your folate is low, you need it at the optimum range to absorb B12. If it was me personally I would take copper to be better able to absorb my iron. I think in years to come they will say do not supplement iron only in the very rare cases. Are you taking selenium? Is your stomach acid ok or do you suffer with heartburn, silent reflux or indigestion?
Since your TSH has been suppressed for years you may find it won't ever recover into the normal range. TSH only rises in response to you needing more Thyroid hormones in your body, so doctors may have to make you deliberately hypothyroid by undermedicating you in order to get the TSH up. Even then it could take months or even years for your TSH to rise into the normal range. It's a completely pointless exercise since TSH is a messenger hormone produced by the pituitary to tell the Thyroid to produce more hormone ---- and you don't have a thyroid!
Okay, you might want to push for Pernicious Anemia testing before supplementation (although it is not all that reliable if it is negative). Why? B12 deficiency can cause debilitating fatigue as well. And shots are more productive than pills. Pills can bring up your levels but not help if there is something going on at the cellular level.
But since you are low normal in range, it will be a hard push to get it from your doctor. Go over a b12 deficiency list and see if you can relate.
And have zero expectations for doctors to understand b12 deficiency (if that is an issue for you)
I can also attach my thirty plus symptoms, many that were there for years and many that went poof bye-bye with shots. So you can see if anything is an Oh yes.
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