So I keep requiring a lower and lower dose of levo and after my last results of 0.06 which is even more suppressed then when 6 weeks ago at 0.08.
My antibodies which were in the 600 have dropped into a normal range or remission if people believe in that.
My med consultant didn’t have an answer for me so I’d like to get some opinions, perspective and maybe some experience.
Can I drop perhaps 50 of levo and retest in 6 weeks?
Hello Simba
When of T4 - Levothyroxine you should be dosed and monitored on your T3 and T4 blood test results and not on where your TSH sits .
The TSH was originally introduced as a diagnostic tool to help identify a case of hypothyroidism and was never intended to be used once the patient was on any form thyroid hormone replacement.
Sadly in primary care the TSH is generally all that is run, and why, we are all in this situation of being unwell though told it's nothing to do with our thyroid.
What actual results do you have and do you have any idea where your ferritin, folate, B12 and vitamin D sit, as these need to be maintained at optimal levels for the thyroid hormone replacement to work well in your body and convert to T3 which is the active hormone that the body runs on.
Many of us have had to resort to private blood tests in order to get the appropriate blood tests run which we then discus on here, and then you doctor may take further action on your behalf.
It sounds like you have a thyroid auto immune disease, likely Hashimoto's and read many people find the research of Dr Izabella Wentz very helpful with regards to healing the gut and looking at food intolerances which in turn can assist in reducing antibodies.
Thanks for your response, I’ve read Elizabeth wentz book and put her advise into practise. My b12, d, iron all are in the optimal range. I feel good but over medicated. I believe I’ve put my condition into remission, I’ve had antibodies test 3 times in my life and on the most recent occasion for the first time it’s come up negative which coincides with my symptoms of over treatment. So I’m trying to find a best way to reduce my dose and ideally fast. E.g. can I reduce by more then 25 at a time. I agree with t4 and t3 need to be measured but when your tsh is suppressed I know any gp or doctor would advise a decrease.
I don't think you should be reducing your thyroid hormone replacement and you need to get a T3 and T4 blood test actioned, plus the ferritin, folate, B12 and vitamin D and post the results and ranges back up on here, in a new post, for considered opinion.
Hashimoto's attacks the thyroid causing erratic thyroid hormone production.
You can experience " hyper " type symptoms because of these attacks :
These symptoms are transient and when they are over, the thyroid will be further damaged and you will feel more hypothyroid than before the attack, and likely need a dose increase in T4 - Levothyroxine not a reduction.
Ultimately this disease will destroy your thyroid and you will need full spectrum thyroid hormone replacement.
I’m not just experiencing hyper symptoms my tsh has been below 0.08 for the last 2 tests I’ve had. I’ve already had hashimotoes are you trying to tell me that’s now converted into Graves’ disease?
NO : I have Graves Disease and it is not treated with T4 - Levothyroxine but an anti thyroid drug to stop the T3 and T4 hormones rising any further as Graves is not transient but permanent and considered life threatening if not treated.
I simply suggesting that once on medication, T4 - thyroid hormone replacement you need to see where your T3 and T4 are in the ranges, and dosed and monitored on those results and not a TSH blood result.
When first diagnosed the antibodies that were over range and positive are the medical evidence and what your treatment plan is based on.
My antibodies for Graves would have been a TSI and or a TR ab and were over range and I have a diagnosis of Graves AI thyroid Disease.
Presumably when you were diagnosed it was found that your over range antibodies were those of Hashimoto's AI Disease and likely either or, TPO and TG antibodies :
You have Hashimoto's AI Thyroid Disease - there is no cure :
BUT :
you maybe able to control the severity of the attacks you experience through looking at life style and food intolerances, and healing the gut, as researched by Dr Izabella Wentz .
Antibody levels have nothing to do with your dose of levo - absolutely nothing. And, nothing to do with being 'in remission' either.
It's not the antibodies that attack the thyroid, they are there to clean the blood after an attack by the immune system. During the attack, which causes the dying cells to deposit their stock of hormone into the blood, traces of TPO and Tg also leak into the blood, where they're not supposed to be. So, the antibodies come along to clean them up. When that's done, most antibodies disappear, so levels come down. This does not mean you're in remission. They fluctuate all the time, but it is pretty meaningless.
Because of these attacks, TSH/FT4/FT3 also fluctuate. But the FT4/FT3 move faster than the TSH, which means that the TSH is a very bad indicator of thyroid status. Dosing by the TSH will therefore make you ill. Not all doctors do that, some have slightly more knowledge of thyroid. But those that do are to be avoided like the plague because, not only will they keep you sick, they will make you sicker.
As for symptoms, you've fallen into the trap of dividing symptoms into rigid lists of 'hypo/under-medicated' and 'hyper/over-medicated', whereas in reality, many of them can be symptoms of both. If you are only taking 25 mcg levo, your symptoms are far more likely to be due to under-medication than over. And, if you were in remission, you wouldn't have any symptoms at all on that dose.
So, I would suggest that if you can't get your FT4/FT3 tested by the NHS, you invest in your future health by getting private labs done. I'm sure it will be money well spent. 
If you are feeling well you can drop your levothyroxine dose more quickly. You could skip a few days tablets and then resume on a lower dose, or if you feel bad take a double dose for a couple of days to catch up. This quicker approach makes it easier to judge your response.
However, with a very low TSH your thyroid will be dormant and it make take time to recoveras will TSH so I would get TSH, fT3, fT4 measured to make sure you keep fT3 and fT4 at reasonable levels.
Sometimes thyroditis can be temporary and there is no need for lifelong treatment provided the thyroid has not been substantially damaged.
Hi Simba145. There is no remission for autoimmune disease. Only optimal treatment.
Do you have FT4/3 results? Testing antibodies and TSH really isn’t helpful once treatment starts.
My TSH is 0.003 and I am optimally treated because I maintain my FT3 at around 70% through range. TSH is only an indicator that something has gone wrong (initially) this could then lead to investigating but from here on in, FT4/3 are the best tests to support reasons for symptoms.
There’s so many documented cases of people with hashimotes not requiring medication anymore and having normal thyroid function and even thyroid regeneration (up to a certain point). Why would you not believe remission is possible?
Thanks for the reply of course.
But for me my tsh has always been a good indicator, my tsh usually sits around 0.5 to 2.5. When it goes above 4 I’d increase my dose and feel better. In the rare instance it drops below 0.09 I’d decrease but that’s only ever happened once.
I’m in the odd predicament after trying a certain therapy which I won’t mention because it would probs have the post deleted. I suddenly feel good, losing weight, sexual function is back to normal and now my tsh is to high and to me that’s a sign I required reduce medication because my thyroids either working better or recovering.
Documented cases? I’ve not seen any, but then again, I’ve not been looking because I honestly find it hard to believe most ‘documented’ anything. The studies haven’t helped me as an individual. In fact they’ve actively worked against my cause to become well.
If you truly think that remission is possible, your FT4/3 results are optimal, then yes lower your Levo. But do so with the knowledge that Hashimotos can be a roller coaster.
Thank you. I’ll come back to this post in 4 months and see how I’m doing. Hopefully I’ll have good news or you’ll be right.
Oh gosh, it’s not about being right, it just is what it is. Best of luck on your journey.
Just testing TSH is completely inadequate
Before considering changing dose strongly recommend getting FULL thyroid and vitamin testing
How much levothyroxine are you currently taking
TSH is frequently suppressed when adequately treated
Most important results are ALWAYS Ft3 and Ft4
What were most recent Ft3 and Ft4 results
What vitamin supplements are you currently taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Ok so everyone’s telling me t4 and t3 are all that matters, so in that case that is the optimal range for each and at what reading do they indicate a need for medication reduction?
Well it varies for individuals
Typically on just levothyroxine
Ft4 at least 60-70% through range
Ft3 at least 50% through range
Some may need higher levels
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
Optimal is mostly based on how you feel, symptoms and/or lack off. What is optimal for me will not be the same for you. Blood tests are only a guide, used in conjunction with how well you live your life. How much they do or don’t interfere with living the life that you choose to live.
If you didn’t have access to blood tests, how do you feel today? If life is good then leave well alone, if not make minor adjustments till you feel good 😊
Can Levothyroxine make you gain weight?
how long can I leave it until I request a dose drop in carbimazole?
Starting T3(Tiromel) on top of existing levothyroxin: suggested doses/daily timings
Minimum time on levothyroxine dose before testing levels
Can you feel the levels of t4 drop in the body? or could it be a Hashi hyper swing?
