I have been diagnosed with Hashi 7 months ago and have just started to switch from thyroxine to combo of thyroxine and NDT due to never feeling well.
Due to combo switch my bloods are now not levelled again (not that I felt any better when they did! Level on just thyroxine)
TSH was bright to under 1 and increased to upper level of 3 when combo was introduced, resulting in me feeling terrible again. (When diagnosed 7 months ago it was over 100)
I have little faith in my Endo and am told regularly that I am a mystery to him and I should be feeling better.
Does anyone know how I go about finding an understanding one that that can help?
Can anyone offer advice on supplements and diet? I eat a healthy balanced diet but am searching for answers to try and make myself feel better.
Thanks so much for reading this 😊
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Milford22
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What exactly do you mean by 'my bloods are now not levelled again'? Do you have the actual numbers? We like numbers here : result, range and dose. Otherwise, anything that is said will just be a wild guess.
What were your levels on T4 only? How much were you taking?
What are your levels now? How much are you taking?
How long were you on T4 only?
How long have you been on your present dose?
Have you had your nutrients tested - vit D, vit B12, folate and ferritin? Results?
What do you call a healthy diet? That means different things to different people.
As a general rule, a balanced diet should be good. Some people, with Hashi's, need to be on a gluten-free diet. Others have trouble with dairy. You should eat what makes your feel good.
Just one thing should be entirely banished from your diet : unfermented soy. And, that means avoiding processed foods but they are full of them. Artificial sweeteners and highly processed oils can also cause problems.
But, there is no magic super food that is going to solve all your problems. And, the main thing that is going to make you feel well is optimising your thyroid hormones.
I eat a well balanced diet of home cooked food. Plenty of chicken, fish, fruit, veg and salad, and yogurt.
I’ve never had any health issues with my weight never being effected and it still isn’t now, which I’m surprised at as have read so many people pile weight on with this condition.
I drink 3 litres of water a day and used to exercise twice a week but now can’t even walk my dog some days.
I’m just searching for answers but being told by my Endo that it’s a time thing and due to me being so under active could take a while. 😊
That's a lot of water. Are you always thirsty? You can drink too much water, you know. It bleeds your body of electrolytes, if you drink too much.
Not all hypos put on weight - although quite a few do. But some actually lose weight. So, you can't judge anything by that. The fact that you can't walk your dog suggests that your T3 is low.
But, if you want answers, first you have to ask questions. So, ask away!
No, I haven't heard of him, but I don't live in the UK. Why not start a new post and ask people to PM you if they've seen him, to say what they think of him? Can't do that on the open forum.
Have you been tested for diabetes? Or kidney problems?
Yes, you do need to have antibodies tested, because if you have them, they might be causing some of your symptoms. In which case, you need to take measures to lower them :
1) suppress TSH
2) adopt a 100% gluten-free diet
3) take selenium.
And, also because if you have high antibodies, it will mean you have Autoimmune Thyroiditis - aka Hashi's - which can do strange things to your results, so you need to be prepared for them - because your endo/doctor sure as hell won't be!
Thanks so much for replying. I’m new to this so hope I’ve made sense to you.
July - T4 only - on 125 mcg
Blood results: T4 20.5, TSH 1.39
Told Endo still very symptomatic Hair thinning, joint pain, not as bad but still there. Pins and needles and very tired still, head pain shooting pains and headaches all the time.
I requested he check my T3 and he agreed.
Next visit - August saw Endo and I asked can I go NDT as felt no better. Told yes but combo first. Results at that appointment as follows:
On T4 only still 125mcg
T3 5.0
T4 24.7
TSH 0.40
Then T4 decreased to 75 and T3 Erfa 30mg (one tab introduced)
September visit TSH increased to just over 1 but he was not concerned and said see you in December. ( can’t find exact results)
October started to feel terrible and requested doctor took bloods and they only took TSH - level 3. 56. Went straight to Endo and he seemed surprised I felt so ill as not much of an increase. Again told I’m a mystery and offered no support apart from an increase of T3 as follows: 30 mg plus half tab of 15mg so total 45mg and T4 same 75
No, I'm afraid it doesn't tell us much, because you haven't put the ranges for your results, and that is absolutely essential. Also, I don't understand which you're taking - T3 or Erfa? Not the same thing. And, if it's Erfa, why all that extra T4?
But, a TSH of 3.56 is too high, and does indicate under-medication. Also, he should know that when you are taking T3 or NDT, it is absolutely essential to test the FT3. It is the most important number.
But, there's no mystery. You have Hashi's. And with Hashi's, levels do tend to jump around like that. Which is why you need your TSH suppressed. I do wish doctors would learn about Hashi's, instead of just dismissing it!
Have you tried a gluten-free diet? Are you taking selenium?
OK, but that doesn't explain why you are taking extra thyroxine. Do you really need all that T4? Why not just increase the Erfa and drop the thyroxine altogether?
The gluten-free diet is not because you have issues with food, but to lower your antibodies.
Did you know that biotin can interfere with thyroid hormone tests, and skew the results? You should stop taking it a day before any thyroid tests.
There is no such thing as a good multivitamin. They are a total waste of money at best, and dangerous at worst. You would be far better off getting tested and taking just what you need, in adequate quantities, according to the results.
For the most part, endos simply do not know enough about thyroid to treat hypos. They are diabetes experts. Telling you that you will feel better within a week of the increase shows that he has no idea what he's talking about!
The heartburn will be due to low stomach acid, which hypos usually have. You could try taking organic apple cider vinegar, in water or fruit juice, before each meal to raise the acid, and improve digestion.
And, we still need the ranges for your blood test results to be able to make sense of them.
The usual combination is T4/T3 or T4 only or T3 only or NDT.
I think I'd stick to NDT at present and gradually increase your dose by 1/4 tablet every two weeks. Always keeping an eye on your symptoms and pulse/temp. If symptoms begin to subside you are on the way forward. The aim is no clinical symptoms with a Free T4 and FT3 towards the upper part of the range. A TSH of 1 or lower is fine.
Also get B12, Vit D, iron, ferritin and folate tested. Deficiencies in these also cause clinical symptoms. Everything has to be optimal.
Don't worry about being new. We were all lost at the beginning I'm sure.
1 grain of NDT is equal to around 100mcg of T4, so at the moment taking 1.5 NDT (150 plus 75mcg of thyroxine) so it is quite a high dose to start with equal to around 225mcg of levothyroxine.
I think you are on a bit too much thyroid hormones. I would advise you to stop T4 (thyroxine) and take NDT only. I'd start with 1 gr, taking note of how you are feeling and after two weeks add 1/4 tablet and so on until you are symptom-free. If either pulse/temp goes too high drop back to previous dose.
I am not medically qualified but had undiagnosed hypothyroidism.
I’ve looked on the sticker and it says 30mg half grain. So I’m taking 1 tablet and another cut in half again plus the 75 thyroxine. Compared to the previous 125 only thyroxine.
I agree totally, I’m paying him privately and he’s just saying I’m a mystery.
I have never had any faith in him but don’t know where to turn to get a good understanding one. Can you help with this, is there a website do you know?
No you are not 'silly' I, myself, had no knowledge whatever about the thyroid gland. Even worse neither did any doctor(s) specialists I saw over quite a few years. Of course, they diagnosed me with things I didn't have and was given completely unecessary treatment.
T4 is levothyroxine (or thyroxine and is synthetic) and is an inactive hormone - it has to convert to T3.
T3 is the only Active thyroid hormone and our billions of T3 receptor cells need T3 for our metabolism to work normally.
NDT is the original thyroid hormone replacement made from pigs thyroid glands. Before that we died.
As it is made from pigs gland it contains all of the hormones a healthy gland would produce i.e. T4, T3, T2, T1 and calcitonin (good for bones).
Have a read of the Thyroid UK site-they run this forum and are also recommended by NHS Choices for thyroid dysfunction. Lots of good info on there but pay particular attention to the correct way to take you meds and when to take other medications etc. Shout out if anything you don't understand.
Get a full blood test on medichecks or blue horizon the thyroid plus ultravit. Finger prick test first thing in the morning before any meds fasting water only. Leave off biotin/b12 for a few days before then. Post results in here far more useful than any endo or GP in my humble opinion, then read read read up on hashimotos! Books by izabella wentz I found really helpful I thank God for this site!! I know I'm getting well due the advice on here and I was only diagnosed 7 months ago, I'm not 100% yet but doing a damn sight better than all the other hypos I know because I'm listening learning and reading!
This is a link and Medichecks have an 'offer' every Thursday. It may not always be the ones you want. Both Blue Horizon and Medichecks are recommended.
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Advice on medication 
Test results any advice please x 
Thyroxine troubles
Posting again as no replies...can anyone help with my results?....
Any further advice on Blue Horizons results greatly appreciated :) 
