Diagnosed Feb 16 underactive and hashimotos. Ive never seemed to get on top of it. I have been under a ridiculous amount of stress for 18 months, my mother diagnosed terminal, we bought a house with annex that required full renovation, I have a 4 year old, been horrendous living together, on top of eachother as work not complete, mother been in extreme pain, then an op which has potentially changed her prognosis, months of seeing her on chemo. All whilst trying to have a relationship, be a mum and start work.
I'm forever run down. Recently I've noticed I'm going through bouts of terrible nausea, I've had it over a week now, Dr given me anti nausea medication. Stomach all over the place. Diarrhoea about 30 mins after dinner 3 days running. It could be a bug but it's 3 times in 2 months. I'm getting terrible restless legs (ankles) especially after these bouts of illness. I've gained 2 stone in 2 years. I'm a bit of a mess. I'm incredibly stressed and anxious. So tense it worries me.
Currently taking 150 levo and 10-15 lio daily. Have been on this dose for 6-9 months. Dr trying to remove the T3 due to cost. Seeing endo next month. To be honest I'm wondering if there's any point fighting for T3 as in all honestly I'm not feeling better. Just know I won't get it back.
March 18 results
Vit D3 56.7nmol/L (>50)
T3 4.1pmol/L (3.1-6.8)
T4 11pmol/L (12-22)
TSH 0.10mu/L (0.3-4.20)
Ferritin 70ug/L (28-200)
B12 409ng/L (180-640)
Folate 8.5ug/L (3-20)
Any advice/thoughts would be appreciated.
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misslissa
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I have been on levothyroxine for 33 years and I have never felt any benefit from it , I think people like us just learn to get on the best we can. hope you do better than I have although I should add I have had lots of medical problems so hopefully you will be helped
I'm sorry to hear this. Yes I agree it must feel like an impossibility to get back to health when managing multiple issues. Hopefully my issues can be resolved with some effort.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Vitamin D is too low. Dose needs increasing. Aiming to improve to around 100nmol. Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you try 3000iu for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
B12 and folate might benefit from a good quality daily vitamin B complex. One with folate in not folic acid
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Ferritin is perhaps slightly low. Eating liver or liver pate once a week should help improve.
Your FT3 is still low. Dose should not vary day to day. Suggest you ensure you take 15mcg every day. Retest in 6 -8 weeks and if still not improved increase to 20mcg daily.
Thank you, yes I was told to to 10/15 on alternate days. They are desperately trying to stop giving me t3. I'm not sure if I should fight for it or not. I don't feel it's helped so far.
I have so far avoided going gluten free, it seems so radical but I read it a lot that it could drastically help.
Hey misslissa, so sorry for all you've been through.
You blood values are really awful. Way to low on most, esp you thyroid. What you say about your stomach, I'm guessing you have low stomach acid and you're not able to absorb iron which then in turn blocks thyroid hormone conversion and absorption. Also ask for a full iron panel. You just show ferritin but if you have inflammation in your body it will be falsely elevated. Get iron, transferritin and saturation tested too.
Do some research on how to take betaine hcl with pepsin and see if that helps.
Also look into a methyl B12 nasal spray with added methyl folate. Neamin makes a good one but there might be others.
Hang in there. And if you doctor is part of the problem don't hesitate to fire her. Most of us have to do that one more then one occasion.
I'm a foreigner in Germany when things are different but equally disfunctional. But it's seems many of these tests you can order online. Is that maybe an option. I'm in the middle of my own iron nightmare and fighting with medical dotards so I truly feel for you. Also some of your symptoms seem very similar to what I going through. I finally got an infusion today but the woman who took care of me went on and on about how unbelievable it was that my GP refused to give infusions. She also made sure i understood next time I should go to the hospital. That GP is fired!
For you it might or might not be iron but a simple ferritin test on it's on tells very little about your iron status.
Don't give up. We all have similar stores and are there for you.
Hi misslissa. Sorry you're feeling so unwell. You have lots of stressful events going on around you and I'm thinking some mindfulness meditation would help you. I have found this has helped me. I am 1.5 years in from diagnosis and currently on a quest to heal my gut, get all my vitamin & mineral levels up and introducing t3. All following the advice from very knowledgeable people on the forum. Take all the advice you can from them and I do hope you feel better soon xx
Hi Lizi, I don't think the importance of stress reduction can be recommended enough. Getting circulation to the gut helps healing. I've come across a product that I'm asking people to look into. I think it works but I don't want to make a broad post about it. It's developed by a man who understands leaky gut; this is supposed to close those junctions. I'm just mentioning it and if people care to see if it works for them and tells others.....
There have been studies and trials and it appears to work. It's called restore4life by Zack Bush. Naturally I am NOT affiliated in any way but I feel it is unlike any other supplement for leaky gut. No response necessary.
I'm incredibly stressed. I am aware of it and trying to talk myself down a lot but it's hard. I feel getting on top of it would really help me. Also going to have a read about leaky gut!
You are justifiably ill for sure. Even when you are in tiptop shape it's hard to cope but when you have an autoimmune condition you lose your defenses. At some point your body is just trying to keep you alive. We've had a lot of learning from functional doctors who do understand what is going on. Conventional doctors has no idea but they look at everything as some sort of drug deficiency.
I don't want to get complicated but the activity of the organs need certain bacteria to work on making the vitamins and bringing in nutrients our body needs. Most are lining your gut all the way down. When you lose this "microbiome" it loses a lot of ability stay healthy. In Hashimoto's and gluten is your problem, it's due to the immune system trying to keep bad things out of your blood stream and since thyroid tissue is similar to gluten proteins which may have been released through the leaks in your gut your immune system goes after them along with thyroid tissue. Before it gets to the intestines, wheat has changed since genetically modified food came into being. Yeast bread used to contain iodine and in some places they use bromide instead which is also bad for your thyroid.
It's a shame that so many things we eat are not healthy but by far the worst has been the action of antibiotics. It kills your microbiome. They are using something on crops that is actually an antibiotic not to mention the ones injected in animals.
I usually post videos by John Bergman who is great and David Clark who explains what goes wrong with the thyroid. The links from SlowDragon are good as well but this guy has it in a nutshell though it may be a little advanced for you. I really hope you can make some progress. I think your body may be fighting the levo, I take T3 only.
Dr. Bush has a product called Restore and this is not to sell it but he does explain leaky gut. youtube.com/watch?v=jB0lL4R...
Sorry to hear about everything you are going through at the moment.
Are you gluten free?
The advice is good - your vitamins levels are v poor and I’d definitely consider a comprehensive stool analysis to see what exactly is happening with your gut. Low stomach acid/ bad bacteria/ candida etc.
Also your t3 and t4 levels are low. In fact your t4 is under range. I would think that the poor vitamin absorbtion will not be helping here.
Personally I think d 3 is too low at 3000 ui. I’d start with 5000 for a good few months. That said if you gave an absorbtion issue all the supplements in the world won’t help( spray is an exception) if you have upset stomachs so often.
Have you ever tried taking your temperature to see what it is?
You should be aiming for 36.50.
Try reading Sarah Myhill. co.uk and search under orchestra- it’s the best article I’ve read to getting back to good health.
Are you able to go to say Pilates for an hour of relaxation/ gentle stretching?
Hi, no I'm not gluten free. I've held off for ages. I know the research is there. Yes my t4 has been under on the last two or three tests which is why the Dr put my levo up from 100 to 150 over the last few months. Not changing though. Unless my latest test says otherwise of course.
My ferritin and vit d have both been under in the past but no gp has been concerned.
The best doctor to help with thyroid problems is a properly trained medical doctor who is also a functional/intergrated doctor so has full functional medicine training. These are all private doctors. Especially when having had lots of stress and Hashimoto's.
I had both of these and more. I had a Chronic Fatigue Syndrome. I have worked with a functional doctor and a functional nutritionist. The most important thing is to take care of your gut health. I had a bad Small Intestinal Bacterial Overgrowth (SIBO) as a result of a lot of stress. Stress slows down the thyroid to start with so stress needs to be banished. (I know it's not easy, but it's impossible to recover from these issues with too much stress around. (I also have a daughter who is now 5.)
For the Hashimoto's it's important to go on a 100% dairy-free and gluten-free diet to get those antibodies down. No traces of these either. And it's a good idea to find out what food sensitivities are around. Hashimoto's is usually caused by either dairy or gluten proteins leaking out from the gut. Meaning the gut walls are in a bad shape.
As for your test results:
Vit D3 is way too low. It would need to be around 100 to be on proper level.
T3 is ok, but not great. I managed with no medication with that level.
T4 is understandably low due to medication. This is ok. Same with TSH.
Ferritin is ok. It needs to be a bare minimum of 60, preferably around 100.
B12 is way too low so this needs to be also increased. The minimum is 500 for proper levels. It's almost impossible to get this too high. Japan has proper range for B12 and is 500-1200 and anyone below this gets injections.
Folate could be a bit higher too.
As mentioned I've worked with a functional doctor and a functional nutritionist and I'm off all medications and my thyroid antibodies are down. Still working on my allergies and gut health. The thyroid is ok and I'm off the bed after spending way too much of my time in bed and sofa.
Yes it's called Clever Guts......gluten free highly recommended by him too
It's easier that you think. Lots of other options when eating out. Hardest is eating at friends or family, but they "get it" when they see improvements
Because you're on T3 medication has lowered the TSH so this is not bugging the thyroid to make T4 hormones. So the thyroid is hardly making any T4 by itself. The amount you have is mainly from the T4 medication. And because the body has just enough of T3 from the meds, there is no need to make more. T3 medication affects TSH and T4.
I'm not familiar with Dr Moseley's book. I'll have a look into it now though. Yes, the gut has a lot to do with the thyroid directly and indirectly.
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