I have a few questions so I thought I would write it all in one post.
Firstly, I was diagnosed as Hypo back in Feb, but have been symptomatic for around 5 years. My GP told me to just eat less and exercise more and that I had IBS. I knew that was wrong so I went private and they finally checked my T4 as well and put me on 25mcg of Levo. Well that just seemed to make it worse so through Thyroid UK I found another Doctor and have now been put on NDT this is my 3rd week and I have gone from 1 grain to 1.5 grains. I have also been diagnosed Estrogen Dominant, I was taking the lozenges but I had a bad reaction so this month I will try the cream.
So my questions are these;
Does it get worse before it gets better? I seem to be even more symptomatic than ever, is this just because that is the way it would have naturally gone and i need to be patient to let the medication work? Or should i start thinking about switching to just T3.
I know we are all different and respond to medication differently but time-wise, how long should I give it before I try a different route?
My mood swings are scary and often. I don't feel like myself physically or emotionally and I am so so scared of not coming out the other side of this.
I have put on over 25 kilos, my hair is falling out, my skin is constantly itching as is my scalp, I have aches and twitches all over my body. I can't walk far without being out of breath, I wake up but never fully wake up and then find it hard to sleep. I know everyone here has experienced this or something like it, I know I am not alone, and yet I feel very very alone.
The negative, paranoid thoughts are over whelming. I don't recognize myself, and I am losing everything that makes me, me. It feels almost like I am watching myself drown.
Sorry! Its not all doom and gloom I know, It's a low day I guess. At present I take:
I'm not an expert at interpreting results but I think you are still undermedicated. Others will be able to confirm. It is awful to feel like you currently do but you really aren't alone..we all understand x
Thanks NatChap! Yes I think so as well , but I have been told to only up by 1/2 a grain every two weeks. I'm not sure I am able to convert to T3 though, so I'm worried to up it too much. Have you had any experience with this?
You mustn't try and increase too quickly as you risk hyper symptoms and trust me they aren't pleasant! NDT contains direct T3 so good if you don't convert well. I increased by 1/4 every 7-10 days. Increasing by just a 1/4 as you get to around 2 grains is better as it's easier to tweak the dose (1/2 may be too much when you get higher). On NDT your TSH should be lower than yours is, definitely below 1 and possibly suppressed? Your T3 needs to be higher. Like I say, I'm not an expert in interpreting blood results..I'm a novice myself I've been on NDT for around 3 months and am feeling about 90% better..just found out I have antibodies though so am looking at going gluten free. I'm sure you still have plenty of room for improvement xx
Take a look at my posts on my profile, you may find some helpful. I had been on 125mcg levo and was improved but still didn't feel normal..some symptoms were lingering and I still had to have naps etc.. I switched to NDT and started feeling better after a few weeks but did have a few ups and downs after that. I increased up to 2 3/4 grains and felt great but then started to get hyper symptoms so I reduced back to 2 1/4 and I feel fab again now. I think that I initially felt well on the higher dose as I had been under replaced but once my body started getting the regular T3 that it had been missing I actually didn't need quite so much so don't rush the increases and be prepared to tweak. NDT isn't a quick fix, it still needs 'work' but once you hit the right dose (provided your vit and mineral levels are good) then you really will notice the difference!
I want to hug you right now!! Thank you!!!!!! Ok, I shall be patient. And have a read through your old posts. I am glad to hear that you 'feel fab'! Thats such positive news xx
You can combine ndt with t3. I cannot tolerate levo. It makes me swell and put on loads of weight and my IBS plays up. I didn't get any of that with ndt. I felt better for a week and then bam, all the hypo symptoms came back again. I started on ndt and got up to 6 grains but still felt ill. 2 weeks ago I reduced ndt right down and introduced t3. The first week was rough but I am getting better by the day. Give ndt a little more time. Some people do better on high t3 than others and you have to give ndt a chance to work properly first. I increased sooner than 2 weeks with ndt and was fine.
Thanks KatieKatie! I'm thinking about introducing t3 if I'm still not feeling better in a couple of weeks/months? How long did you give it? How many grains of ndt and t3 did you start with? xx
I agree with NatChap, give the NDT time. It takes 6 weeks for your body to adjust to any particular dose, so you've got to kind of think of changes in blocks of 6 weeks. Things move slowly! I've also recently started on NDT, back in November. I'm really hoping to be almost back to normal in 3 to 6 months.
Crikey!! It seems inconceivable to me to take that much..I would be rocking in a corner This is the problem is that there is no 'one size fits all', it is just trial and error (generally more error!) before we find what suits us x
Yes we are all so different with it. It seems never ending really.
Well I am not 100 percent sure but I think t3 is 4 x more potent than t4 so if you take 25mg of t3 it the same as taking 100mg of t4. I had to do my sums and work it out. I started on a simalar dosage I was on, I reduced my ndt to 2 and then i take 50mg of t3. It's all a bit complecated but I do not respond well to t4 and ndt is mainly T4 with a bit of t3 i think its 38mg t4 and 19mg t3 in ndt. I just wasn't getting enough t3.
I gave ndt about 10 weeks altogether. Everyone is so different though, it might just be that you are not optimal yet and need an increase when its time.
Thanks KatieKatie, Yes I think you are both right, I should give it some more time. Did you manage to get your t3 prescribed by your GP though? The other issue is trying to pay for it all. :0
No I purchased it from a company that lots of people on here purchase it from. I do not have an official diagnosis by the nhs its all private testing. My doctor refused to test me again. I was almost dead. So i do it myself now. I just dont trust doctors. If you decide to buy it inbox me and I will send you a link. Keep at the ndt first though.
Some people find that it can take 6-12 months to feel 'better' even on NDT so unless you really don't feel any improvement after a couple of months I would stick with it. I feel better with regards to my moods, energy, stamina etc.. but still have joint pain which is why I am looking into going gluten free. I am also going to do a cortisol test as adrenal fatigue can hinder progress on NDT so that may worth considering too x
Indeed, I had my adrenals tested, it looks like I am coming our of having adrenal fatigue so that is definitely a factor. Will need to do another test in 6 weeks so will see how feel then. xx
Hi I have been on NDT for at least a year now..it takes time and you have to be patient...I have no thyroid and was on t4 since 2004...I also learnt the hard way never ever compare your dose to someone else's and what you think you should be on...I am on a relatively low dose compared to many but I am much better now than I ever was on t4. Persevere with one thing at a time but don't rush it.
Did you get tested before starting the kelp? It's really not recommended for people on thyroid hormone replacement, because that gives you extra iodine, anyway. Excess iodine can cause all sorts of problems, and could be exacerbating your symptoms.
Any particular reason you are only taking B1 with your B12, and not a B complex, to keep your Bs balanced - which is what is usually recommended.
Why are you taking Ashwagandha? It doesn't suit everyone, and could be contributing to your not feeling well.
Have you had your vit d, folate and ferritin tested?
Your FT3 is still very low, so I'm afraid you're just going to have to be patient until it gets higher. You can't hurry these things, I'm afraid.
Thanks GG, My Doctor told me to take both kelp and Ashwagandha, but I'll happily take them out of the equation and look into taking a B complex instead. VIt D was low last blood results but I am due to get some more this week. So will post them once I get results. Thank you !!!! x
Yes, there are a lot of doctors that think that all a thyroid problem needs is iodine thrown at it. That's because they have no idea how the thyroid works, or the problems you can have with it. I had a doctor like that, and the iodine made me ten times worse!
The B complex is not to replace the iodine and ashwagandha, there's no connection. A B complex is needed when you take B12 in order to balance the Bs, because they all work together.
Nature-Throid® (Thyroid USP) Tablets, micro-coated, easy to swallow with a reduced odor, for oral use are natural preparations derived from porcine thyroid glands (T3 liothyronine is approximately four times as potent as T4 levothyroxine on a microgram for microgram basis). They provide 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3) for each 65 mg (1 Grain) of the labeled content of thyroid
What they are doing is stating the thyroid hormone content.
All T4 can be called levothyroxine - whether it comes from your own thyroid, a chemical factory or a pig.
It is simply a convention to call it levothyroxine rather than tetraioidothyronine.
(There is a substance dextrothyroxine which is identical to levothyroxine but the molecule is twisted a different way. It is to ensure no confusion between these that we refer to levothyroxine rather than just "thyroxine". This was formally introduced as the medicine name only about ten years ago.)
All T3 can be called liothyronine - whether it comes from your own thyroid, a chemical factory or a pig.
It is simply a convention to use the word liothyronine for the synthetic medicine and triiodothyronine for what your thyroid produces.
As the company is trying to explain the equivalence to any other source of thyroid hormone such as tablets of levothyroxine, liothyronine or a combination, it seems entirely reasonable to express it in those words. They are NOT saying that the product contains synthetic thyroid hormones.
All the thyroid hormone in Nature-Throid comes from pigs.
Thyroid USP is dried, defatted, ground and standardised porcine thyroid with the addition of a small range of other substances such as lactose or sucrose, as needed, to maintain potency across batches.
This was when I was on 25mcg of levo. I am going to run another test in 3 weeks after being on ndt for 6 weeks. Should I ask to get my reverse t3 checked? Not entirely sure what reverse t3 is?! xx
rT3 is rather controversial, because we all, naturally have some. And very few people know how to interpret the test result. So, as it's expensive - and never done on the NHS - I don't think it's worth bothering with that for the moment.
Reverse T3 is when the wrong atom of iodine is removed from T4 (and recycled!) so that the resulting rT3 does not fit into the receptor. Some say it gets stuck there, and stops T3 entering the cell. Others say it doesn't. But, in nature, rT3 is a way of slowing down the system and resting the body when it's ill. The difficult point is : how much rT3 is bad rT3. So, ignore that for the moment.
Your FT3 is much, much too low. There is a bit of a conversion problem, there - although, to be honest, you don't have much T4 to convert. So, you really do need an increase in something.
No, there's no iodine result there.
TPO 'borderline' is just silly. Antibodies fluctuate, so there's no knowing if that result was as high as they get, or as low as they get. If I were you, I would just assume that I have Hashi's and act accordingly.
I don't know very much about the sex hormones, but they are quite low in range. I don't know if that's a problem.
You are amazing!!!! Thank you so much, How do you manage to explain it so that its easier to understand, I have been on countless websites, seen many doctors and that was by far the best explanation I have ever had. THANK YOU! xx
Oh no, just wrote out a long post and the forum lost it! Highlights are:
1) You are under-medicated. FreeT3 should be in the top third of the range, yours is rock bottom.
2) Agree with GG that both and kelp ashwagandha are not suitable for hypothyroid ppl.
3) The other big levels you need to check are vitamins D and B12, folate , ferritin. All need to be at least halfway up the range , and its common to be deficient or very low on these.
4) The timescale is often slow. Changes take months. You've already gone through at least 2 phases of treatment in the 4 months you've had, which is very fast progress. You are currently on far too little medication, but you're increasing very fast , so you will soon be getting close to the right dose. Hopefully you'll start feeling better with each increase.
Thanks for this SA, I'll post bloods when they come through and stop taking kelp and Ashwaganda in the meantime. I am also thinking of looking into b12 injections, but will see what the blood says first.
I don't know much about it, but you will get good advice on the forum about raising levels if you have deficiencies ( very different to what your doctor will call deficiencies - their ranges are stupid and you can be v sick while they are saying the numbers are fine). But if you don't have deficiencies there is no point.
Just want to say a huge THANK YOU to all you wonderful people on HU. You have been the best support and help with all of this, so thank you thank you thank you!!! I hope I can give back as well! xx
I'm a novice here as well and in the same boat as you. I've been on ndt (thyroid-S) for just over 4 weeks. I'm trying to be patient and stay on 1.5 grain until I get my thyroid hormones tested in 2 weeks time. I'm feeling much better than before starting ndt but I'm definitely not my old self yet...and I have a long way to go. We just need to be patient and, fingers crossed, we will get better with time Take care x
Thanks for the message! I'm sorry to hear you're still not feeling 'optimal' but comforted by your words. It looks like we are on a similar time frame, happy to check in over the next few months to see where we are both at?
Of course! I'll also post my thyroid hormones results in 2 weeks time to ask people for advice on how to proceed with my ndt dose increase.
I find it frustrating and anxiety provoking not knowing whether I'm doing exactly the right thing ("should I try this ndt or another?", "should I add T3?", "should I increase or wait?"), wondering how long it will take before I feel o.k., wondering whether I'll be the "old me" again. I feel reassured that there are other people who have experienced it before me and others who are on the same path as me ;))
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I've been on NDT for around 3 months and am feeling about 90% better..just found out I have antibodies though so am looking at going gluten free. I'm sure you still have plenty of room for improvement xx
xx
This is the problem is that there is no 'one size fits all', it is just trial and error (generally more error!) before we find what suits us x
Test results from lab:
No conversion problem?
Would like Feedback on Recent Blood Test Results
Severe Anxiety,Depression and Pain, in Seattle WA
