I decided to discontinue Levothyroxine because it has never made me feel better since I started taking it in 1994- decided on the 7th Sept 2023 to take NDT Thyroid S - full thyroid blood test done end Oct results below. TSH is too low because I increased NDT too quickly to 2 grains- I have now reduced to 1 1/2 at about 4am each morning. I would appreciate view on all elements of test results
TSH 0.021 range 0.27 to 4.2
Free T3 5.0 range 3.1 TO 6.8
Free Thyroxine 12.1 range 12 to 22
Thyroglobulin Antibodies 94 range 0 to 115
Thyroid Peroxidase 9.8 range 0 to 34
CRP HS 0.284 range < 3
Ferritin 85.6 range 30 to 650
Folate serum 34.3 range 8.83 to 60.8
Vit B12 Active 150 range 37.5 to 188
Vit D 76.4 range 50 to 250
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delboy25
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TSH is too low because I increased NDT too quickly to 2 grains
No, TSH is low because of the T3 in NDT. Although that doesn't mean you didn't increase too quickly. How fast did you increase it?
And it's not 'too low' because to get it any higher you would have to have your thyroid hormones too low, and that's not a good idea. TSH is the least important number of the three - especially when you're taking T3. So, don't worry about that.
Free T3 5.0 range 3.1 TO 6.8
Free Thyroxine 12.1 range 12 to 22
On the other hand, your thyroid hormone levels are probably too low: FT3 only about 50% through the range, and FT4 barely in-range at all. But, the most important thing is how you feel on this dose. If you don't feel good, then it might be an idea to increase it back up to 2 grains again - but only by 1/4 grain every two weeks, not faster!
Hello Greygoose Thank you for your reply. I started NDT on the 7th Sept 23 on 1/2 grain increasing to 1 on 17th Sept and then 2 grains on the 20th Sept -I have read that if TSH goes below 0.2 then there may be problems with conversion of T4 to T3 . I also include below the doctor's report from Medichecks that came with the results-
"It's really great you are keen to know more about your health. As you haven't provided any details of symptoms or reasons for testing, I'm afraid I can only comment in general terms for you. We would be able to provide more bespoke health advice on your results if you provided more information regarding your health, lifestyle and personal circumstances. We do also recommend sharing these results with your doctor if you are experiencing any symptoms causing you concern.
Your thyroid stimulating hormone is low again. This could indicate that your thyroid is overactive. This can cause symptoms of weight loss, agitation, anxiety and skin/hair problems. Symptoms that cause concern include palpitations, breathlessness and chest pain, if you are experiencing these then you should attend your nearest Accident and Emergency Department.
If you are taking thyroid medication, this would also suggest that your dose may be too high. If you are free of symptoms then you may prefer to simply retest this in 3 months. If you are experiencing symptoms of an overactive thyroid then I recommend discussing this result with your doctor.
Your thyroid antibodies are reassuringly normal.
Elsewhere in your test your vitamin and mineral levels are excellent.
Well, that's not too bad, but much better to increase by less at a time. Stresses the body less.
I have read that if TSH goes below 0.2 then there may be problems with conversion of T4 to T3
Maybe, not certain. Some people convert very well with a suppressed TSH. But in any case, you're taking T3 so that's not a problem for you.
Who wrote those comments? Obviously someone who doesn't know that much about treating hypo. To know if your dose is too high you look at the FT4/3, not the TSH. A TSH can be suppressed by T4/3 still too low for good health. Once it gets below 1, TSH is not a good indicator of thyroid status.
Your thyroid antibodies are reassuringly normal.
Thyroglobulin Antibodies 94 range 0 to 115
Thyroid Peroxidase 9.8 range 0 to 34
Well, I wouldn't go that far! Your TgAB are quite high in range. Given that antibodies fluctuate all the time, in a future test they could well be over-range. You cannot rule out Hashi's on the basis of one negative test. Have you ever had them tested before? Besides, some people with Hashi's never even have over-range antibodies and are diagnosed with an ultrasound.
The report was completed by the dr at Medichecks. I agree the reading for TgAB is high in the range .I have had numerous tests done by Medichecks the results for TgAB details are as follows. The full results are in my profile - Dec 2018 TgAB 198 range 0- 115 Took Wobenzym next test done June 2018 down to 150 Tested again Sept 2018 reading 118 tested Aug 2019 reading 70 range always 0 to 115.
I was diagnosed as having an overactive thyroid in 1994 received RAI I have been told that my thyroid will now be totally inactive - No NHS doctor since 1994 has mentioned the word Hashimotos so it has never been treated by the NHS - I treated high TgAB with Wobenzym on the advice given by Thyroid UK monthly meetings after seeing my Medichecks full thyroid test results.
I cannot imagine who or why anybody on Thyroid UK would advise you to 'treat' antibodies with Wobenzym. For a start, from what I can gather, Wobenzyn has nothing to do with antibodies or thyroid. Secondly, most people on here agree that there is no point in trying to reduce antibodies because even if it were possible to get rid of them completely - which I doubt it is - you would still have Hashi's. Antibodies are the result of the disease, not the cause of it. And, they have a job to do, cleaning up the blood, so is it even a sensible thing to do?
Your various results look like typical antibody fluctuations, and nothing to do with the Wobenzym. So it looks more than likely that you do actually have Hashi's. But, doctors don't call it Hashi's anymore, they call it Autoimmune Thyroiditis. But, as you have had RAI, antibodies are totally irrelevant, anyway.
Did you ever have your Graves' antibodies tested: TRAB and/or TSI? I'm afraid that just because you're 'diagnosed' with hyper doesn't always mean you have it. Hashi's starts with a 'hyper' phase, what is often called a Hashi's 'hyper' swing. And, after that, it swings between hypo and false hyper as the thyroid is slowly destroyed. So, it could have been Hashi's all along. Doctors often don't know the difference, I'm afraid.
It's really not worth getting the Medichecks doctor comments because they are just common or garden GPs, with no special training in thyroid. So, just as ignorant as your average doctor.
Wobenzym was definitely recommended at a Thyroid UK meeting based on a trial done in 2002. If you purchase online the box states that it is used to relieve arthritis. It was also trialled with thyroid disease in exactly the same way that Covid vaccines are being tweaked and trialled for treating forms of cancer and with success. It was also suggested to me by a private doctor in East Anglia based on the trial completed in 2002. He states that it can help to get antibodies down, that it had a significant decrease in levels of anti-TPO and anti-TG antibodies. The patients also showed improvements in symptoms, a decrease in cholesterol and triglyceride levels, Furthermore the dosage of Levo could be reduced after 3 months and in some cases dropped altogether. With continuous Wobenzym treatment, improved clinical and laboratory parameters were maintained.
Dr Isabella Wentz from America has had remarkable results with many patients using Wobenzym
I tried Wobenzym for 6 months and at each full thyroid profile test the anti-body reading kept coming down.
Low dose Naltrexone was also mentioned at a Thyroid UK meeting- I purchased it from a chemist in Scotland. The information booklet provided by the chemist states which diseases are being treated with LDN. The list includes CFS/ME and Hashimotos
From my perspective symptoms first and bloods results next. Use the blood tests as a guide only and don’t let doctors dictate treatment based on lab results, if you are feeling fine. The lab results should be calibrated to your wellness not the other way round. GG is correct TSH is the least important and the least reliable measure.
It is also an indirect measure being a pituitary hormone, not a thyroid hormone. Logically the thyroid hormones will tell you more. TSH used to be a diagnostic it was never intended to be carried forward into management of hypothyroidism, but some ‘person’ (I’m being polite) decided to run with it - probably because it was cheaper to run the tests .
Also thyroid disease and pituitary dysfunction that dampens down the production of TSH are not mutually exclusive. One could have a thyroid disease ie Hashimoto’s and have bumped their head at some point and impaired the pituitary and production of TSH as well.
The fact it is simply never looked for or considered doesn’t mean it won’t happen.
I used to ride horses (badly), and had more than the odd fall, one resulting in concussion. Was my pituitary affected??
My TSH has never reached 10 even, but I was hypo when diagnosed and TSH was just over 5.
Thankfully I did get treated started as I was just over range and my free T4 was right at the bottom and I was severely symptomatic.
Hello Charlie-Farley -thank you for your reply. I shall go back to taking 2 grains of NDT during the night ,I always seem to wake up about 4am,to tie in with the circadian rhythm. There is still room for improvement as T3 is not at the top of the range To me the TgAB needs attention it is too high in the range so I shall consider taking Wobenzym or Low Dose Naltrexone. I often think the comments made by several doctors outside of the NHS that something has entered my body which is a major hormone disruptor- the thyroid has been treated but the invasive body is still there so that is why I have never felt better no matter which form of thyroid medication or dosage I take. Thank you for your advice.
I nearly always ask not to have doctor's comments. They ask you to fill in your medical history, but they ask the wrong questions so they can't get it right. You'll get better comments on here.
You say that levo has never made you feel better. Could it be that you are one of those people who do better on T3 only? Worth a thought.
I did trial T3 only several years ago under the guidance of Paul Robinson , taking the T3 at 3am to tie in with the circadian rhythm. Unfortunately I did not feel any better. Paul Robinson and I always felt that proof was needed that the adrenal gland and the pituitary were working perfectly, but the Synacthen blood test did not prove that sufficient natural ACTH was being secreted by the pituitary gland or that the adrenal gland was working perfectly.
It's interesting as I use Medichecks, and have had RAI thyroid ablation for Graves which is detailed on my Medichecks profile and the doctor comments - which I keep forgetting not to include - do not talk of my being over medicated and my TSH is down at 0.01.
On NDT when optimally medicated you will have a low suppressed TSH - it does not matter:
Your T4 will likely be lower than when on T4 monotherapy but your T3 should be proportionately higher.
How do these results compare to your bench mark readings - and did you track you progress on blood pressure, pulse and temperature twice daily ?
It reads as though you have increased the NDT too quickly and there is no point running a blood test until you have been on this' perceived good dose ' for 6-8 weeks as NDT takes time to bed in and settle in the body.
The Levothyroxine will have taken around 6-8 weeks to fully leave your body and the idea is that you slowly build up the NDT by 1/4 grains weekly as the Levothyroxine reduces in your body for a smooth transition from 1 treatment option to another.
Best to go with 1/4 grain increments up or down - I just waited a week between adjustments.
How long did you leave from last dose to blood draw - and are you splitting this dose ?
The ' something that entered your body ' in my opinion was the NHS treatment - RAI which is a toxic substance of which we are still learning of the longer term consequences.
I was advised from here to discontinue NDT for at least 12 to 15 hrs before the blood draw, which I did. I am taking 2 grains of NDT at once about 4am. If something has entered my body it was back in 1977 when CFS first started, but between 1977 and 1994 no doctor at GP or hospital consultant level mentioned the thyroid. If I had not fainted twice in 1994 would any doctor have tested for it. RAI was given to me in 1994 and it has definitely made me worse, but my CFS started in 1977.I have been told that my thyroid is now totally inactive.
You say you took Levo for 30 years but it never made you feel better. We’ve all suffered untreated and misguided for years, and I’m sorry you had to spend so much time not feeling good.
I see you’ve been on this board since 2017, so you’re not new, but welcome back as you navigate your next steps. For me, this board and its advice is 100% the reason I’m getting my life back. I hope you too can pore through the above. Progress even in the best of cases take months and months. But the brilliant and effective advice on this board will demystify the whole thing, you will stop wasting time with wrong treatments, and finally get on the right track. Even when I feel bad, knowing I’m on the right track and going into the right direction is the hope I need. Wishing you the same!
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