I’m very worried after an appointment with an endocrinologist yesterday. My GP sent me because I am treating my hypothyroidism with 50mcg of Levothyroxine and 1 grain of Thai Thiroyd NDT daily.
My last Medichecks test results above show T4 and T3 in range. However my TSH is very low.
I feel fairly well but I do occasionally get upper back pain and have a heart rate of 80bpm.
The Endocrinologist was trying her best to encourage me to stick with Levothyroxine alone, but I really need a bit of T3 in the mix.
I’m being sent to a Professor in Cardiff who will prescribe T3, so I’m hoping that he can help?!
Should I reduce my 50mcg of levothyroxine to 25mcg 3 days pw and leave my NDT at 1 grain to try to raise my TSH?
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Boon79
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My full Vitamin test last year showed that I was deficient in Vitamin D. It was December in the Uk. I have since been supplementing with Vit D spray 1000IU twice a day.
Is iodine bad for someone (like me) with hypothyroidism and Hashimotos?
When I was first diagnosed I saw a GP doctor and private thyroid practitioner (who also suffered from hypothyroidism) who prescribed iodine based supplements.
This was before I was prescribed Levo T4 (50, then 100 then 150, now 125 mcg daily) by an Endo and before I became regularly treated by hospital Endo.
You shouldn't be taking a multivitamin anyway for all sorts of reasons.
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is either pointless or even dangerous, as with calcium, iron or vit D.
Do not be bullied into reducing your dose just because of your endo's irrational fear of low TSH. Your TSH is low because you don't need it. Unfortunately, due to inadequate training, that is something endos find difficult to get their heads around. A low TSH will not do you any harm, and certainly won't cause symptoms.
That said, if you still have symptoms, your FT3 might be too high for you, but you will only know if you try reducing it slightly and see if that helps. But, that's the only reason you should reduce dose, not to raise the TSH. Reducing your levo won't have any effect on the TSH, so don't reduce that.
Thanks Greygoose. I’ll ditch the multivitamins but continue with the Vitamin D. I have a good diet anyway.
I’m going to stand my ground with the Endocrinologist and hope that the professor that I’m due to see will prescribe the same level of T3 that I’m currently taking via NDT. I only have 4 months left of Thiroyd from Thailand and then I’m out as they’ve stopped making it 😔.
Apparently the professor agrees with T3 and prescribes it to many patients.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Optimal vitamin D is at least over 80nmol
Keep a note of your antibodies levels. You may see TPO antibodies slowly drop on strictly gluten free diet
When you are hypo, being deficient in nutrients has nothing to do with your diet. Hypos usually have low stomach acid, and therefore difficulty digesting and absorbing nutrients. Which is why we need supplements. Have you had your vit B12, folate and ferritin tested?
If you are taking vit d, are you also taking its cofactors: vit K2-MK7 and magnesium? The vit d won't do you much good if you aren't taking magnesium.
I have some serious gut issues hence deciding to eliminate gluten and trying to eat gut friendly foods. I’m sure that 2000 vit D would be enough given that I get at least an hour a day outside, more in the spring and summer months?
I honestly don't think an hour a day in the sun will make that much difference to your levels. But, even if it does, if you are taking vit D, you need to take magnesium and vit K2-MK7 as well.
Since yesterday I’ve been taking Vit D with magnesium and K2-MK7 in the evening, four hours before my nighttime NDT. I’m hoping that this could help to slightly increase my TSH to get the Endocrinologist off my back. Failing that I’ll scream ‘I feel well so leave me alone!’ 😂
I'm sorry, but taking vit d and magnesium is hardly likely to raise your TSH. There's no connection. The suppressed TSH is not a fault or a problem that needs to be fixed, it is the pituitary saying that you're taking a decent dose of thyroid hormone, and don't need TSH anymore. It's perfectly natural to have a low/very low TSH when taking T3. The only way to raise the TSH is to reduce your dose of hormone by so much that you make yourself sick again. This endo really doesn't know much about thyroid, does he.
He is a she, and no she doesn’t! I kept telling her that I will not be stopping T3 in any form. I showed her my last Medichecks blood results from November 19 showing T3 and T4 within range, but she still banged on about osteoporosis and the heart!
She is referring me to this professor though so maybe he can help by prescribing T3 along with Levothyroxine.
I’ll continue to take Vit D and magnesium though because last year my vit D slightly was under range.
It is known that when you medicate with any thyroid hormone replacement that includes any T3 your TSH will appear, low or even suppressed in the NHS range.
The TSH is the least reliable measure of anything and if you feel well with your T3 and T4 where they are I would stay put on your current dose.
I read that there are very few doctors knowing how to treat or understand blood test results when some one is taking NDT : and that it is usual to see a suppressed/ low TSH and a low T4 reading.
NDT was the successful treatment for hypothyroidism for over 100 years until the launch of Levothyroxine and it's necessary blood tests and ranges, and Big Pharma of the 1960's.
Prior to the 1960's people were believed by their doctors and given a little piece of NDT to take and if that alleviated their symptoms so be it - that was the dose suitable for that person.
If the patient came back and was still symptomatic, a larger portion of NDT would be dispensed, until the correct dose was met for that particular patient.
I couldn’t agree more and mentioned this to the Endocrinologist. I even told her that it’s an NHS cost cutting exercise to advocate levothyroxine treatment alone. She was quite put out by my comments 🤣
Ok then, so she is out of her depth, or unable to do anything because of the CCG restrictions on prescribing anything other than Levothyroxine.
As you have Hashimoto's your ' goal posts ' regarding optimum medication will change as your own thyroid dumps causing hyper swings and then reduces it's output further giving you more hypothyroid symptoms to alleviate.
So, Cardiff it is, I hope it's not too far away from you and that you'll meet a Professor who can dispel the over reliance on a TSH when both T3 and T4 are in range, and possibly suggests he puts you on a NHS prescription for T3 or NDT.
Stay strong - and if this dream comes true, I'll check out a return train ticket from Cornwall !!!
Everything the Endocrinologist said I had an answer for, but you can’t help feeling panicked about osteoporosis and heart problems. Apparently this Professor will prescribe T3. I don’t doubt it because I believe he also researches thyroid at Cardiff University and have received a letter in the past from them to ask to take part in some kind of trial, but lost the letter 🤭. I live in the area.
If I do get to see him, I’ll post on here with bells and whistles!
I know, I totally understand and no one knowingly jeopardises their own health.
If one is in the NHS ranges and well on monotherapy with Levothyroxine - good.
If not well and on Levothyroxine and kept in the range, ultimately we are left to sort ourselves out and possibly made to feel ' it's something else ' and/or prescribed antidepressants.
Ultimately we find ourselves on here and learning about how hypothyroidism should be treated. We start to learn how to take care of ourselves, we optimise the vitamins and minerals that the NHS will not, and of, course, read of T3 and NDT, and take the next step for ourselves as our confidence grows as we start to feel better.
And that's all any one of us wants to do, feel better, be abled bodied to enjoy our work and leisure time, rather than be housebound, off sick, on benefits, or simply just too exhausted to enjoy our time with friends and family.
I just kick myself that I didn't know anything way back in 2003 when diagnosed with Graves Disease and told I needed RAI thyroid ablation.
Ok, I was ill, and I am dyslexic, so the thought of researching medical books wasn't really on my agenda at the time, and I was totally compliant and trusted the medical professionals..
Thanks to this amazing website and a couple of books, I'm now getting on with my life, but I am having to self medicate and buy my own thyroid hormone replacement.
I didn't want to do this, but I had no NHS option open to me and I was very unwell.
I presume if I ' come in from the cold ', and see a NHS doctor, I'll be encouraged to return to taking Levothyroxine and referred to endocrinology if I persist in taking my NDT. because on this full spectrum thyroid hormone, I feel well again.
Once I had been refused a trial of T3 on the NHS I've notified the endocrinologist and my doctor of my decision to self medicate. I offered to make myself available for the yearly thyroid blood test, providing T3 and T4 bloods were taken.
This was over 2 years ago, and I haven't had no acknowledgement from the surgery.
I find it incredulous that this whole situation regarding thyroid hormone treatment is allowed to continue :
Sounds like you’ve had a similar journey to me. So sad that some of us have to self medicate with foreign NDT. My Endocrinologist even advised that my Thai Thiroyd was ‘dodgy’ despite seeing my T4 and T3 results in range 🤣.
I’m going to fight for T3 if I get this professors appointment. If not, I’ll continue to buy my own NDT.
I feel that I should increase the TSH above 0.01 because the Endocrinologist frightened me to thinking that I will develop heart issues and osteoporosis if I don’t, despite me ensuring her that I feel well.
I didn’t ask for the appointment, but the GP panicked on seeing my recent test results.
My TSH has mostly been 0.02 and I function well at that level. If I lower my Levo on Drs orders and go up to 1 I might as well stay in bed all day. I asked my cardiologist would this be a problem and she wasn’t at all concerned.
The crazy thing is my old GP who’s sadly retired a few years ago was never worried about what my TSH was, and only concerned about how I felt! He had a good knowledge and a genuine interest in the thyroid. He’d even produce charts for me to show what I was like to start, and then what I was like after starting treatment.
I’m lucky the last time I was called in to discuss TSH I too found a Dr who listened. This year when I had my annual check with pharmacist and she mentioned low TSH I just said o’ked by Dr, didn’t tell her how long before and she didn’t look! 👍
Boon.The endo doesn't have a clue. The T3 in thiroyd will take your TSH down and probably suppressed and the right dose, it is nothing to worry about. Presuming you are not super fit a pulse of 80 is very healthy. Take the other advice re vitamins if you are still symptomatic but you may need an increase of Ndt as T3 could be higher if that doesn't help. Can you PM me the name of professer in Cardiff.
Hi. Thanks for your reply. I’ve forgotten the Professors name but will put a post on as soon as I get a referral. IF I GET A REFERRAL! Fingers crossed 🤞🏽
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fT4 dropped from 16.4 to 8.3 after starting trial of NDT? 
Taking T3. Bloods today = abnormal FT4 & TSH. 1st Endocrinologist appointment tomorrow. Please help decipher results! Also: Perimenopausal?
