Hashimoto's, Pernicious Anemia, and Headaches..Help!!

[asmile4u]

I was diagnosed with Hashis and PA a month ago. I was started on 2 grains of NDT and 5mg B12 sublingual as well as B6, a multivitamin, reacted iron, DHEA and progesterone. I was already on 10,000IU of Vitamin D daily. Before my diagnosis I was getting these horrible muscle spasm headaches that would send me to the hospital. When I first started the NDT and B12 they got better, but now they are getting worse again. My doctor does not have me scheduled until next month to check my levels and possibly raise my dosage. These headaches are killing me.

[shaws Administrator]

Welcome to our forum

As you are newly diagnosed, the usual routine is a blood test every six weeks approx with medication increased. It has to be done gradually. It should be raised gradually until you feel so much better. I would bring your blood test forward and tell the doctor you are feeling unwell again. If you should take your medication in the morning with 1 glass of water, on the morning of your blood test do NOT take your medication until afterwards after as it can skew results.

thyroidlifestyle.com/#!auth...

thyroiduk.org.uk/tuk/about_...

Always get a copy of your thyroid gland blood test results for your own records and you can post them here if you have a query. If you haven't had a Vitamin B12, Vit D, iron, ferritin and folate ask for these to be done as we are usually deficient.

You are very fortunate to have been prescribed NDT as it contains all of the thyroid gland hormones we lack.

I have PA as well as hypothyroidism and it is usual to find that if you have one autoimmune condition you get others. I had PA first diagnosed about 20 years before hypo.

Regards

[asmile4u in reply to shaws]

Thanks Shaws. I had a Vitamin B12, Vit D, iron, ferritin and folate done and all were extremely low. My Dr. Has me on high dose supplements for those as well.

[shaws Administrator in reply to asmile4u]

Take your supplements 4 hours apart from your thyroid meds. Your doctor sounds very good.

[asmile4u in reply to shaws]

Yes. I take my NDT at 3:00am and then take the rest at 7:30 am.

[Heloise]

Are you SERIOUS? Did you go directly to 2 grains of NDT? Some of us only take 1 grain, total. You should start at 1/4 grain, gradually working up and retesting a couple of times within the first three or four months. I don't know what kind of doctor you are seeing but I would get a second opinion immediately!

stopthethyroidmadness.com/m...

[asmile4u in reply to Heloise]

I checked out the link and it seems as if my doctor is following the recommendations. Maybe I didn't explain it properly. She started me with one grain for two weeks and then raised it to two grains. She is planning on checking in two months from my start date to see if I need to increase to 3 grains.

[Heloise in reply to asmile4u]

Well, that sounds a bit better although starting with one grain is still a bit fast but if you are still feeling all right, so be it. It really does take a few weeks as you are building the level more each day since the half life is two weeks. You may not FEEL the complete dose for a few weeks since you will still have half of your very first dose in your system as you add another grain to it at around the two week mark.

[asmile4u in reply to Heloise]

Thanks Heloise,

I did not know that. I guess I will just have to be patient.

[Heloise in reply to asmile4u]

LOL, I've gone back and reread my own advice. I've posted it many times for quite a while but now I'm not sure if they are talking about switching from T4 to NDT or if you are starting from scratch now that I look at it again. Anyway, I'm assuming you have not had any thyroid hormone of any type up to now? Sooo, NDT contains both T4 and T3 in a ratio of 4 or 5 to 1. Well, the T3 part of one grain of NDT is around 25 mcg. T3 only had a half life of less than a day so it dissipates much more quickly than the T4 portion. But it takes a few days to feel it fully as well.

So, you are right to be patient and just take note if you get any symptoms of feeling breathless or rapid pulse that lasts more than a few days. I'm sure you'll do fine, just listen to you body!

[Hidden]

Any reason why you're on B12 sublinguals instead of injections?

[Hidden in reply to Hidden]

Also what type and dose of folate are you on (methylfolate or folic acid)? And how much B6?

[asmile4u in reply to Hidden]

I am on 400mcg Methyl and 37mg B6 as well as 1,000mg B5. I was told that they like to start with sublinguals and if that does not work the they move to injections. It is easier on the patient and if absorbed can be just as effective.

[Hidden in reply to asmile4u]

Are you in the UK? If you have a diagnosis of PA you should be on injections. And if your folate levels are very low then I doubt that 400mcg will be enough to correct your deficiency. Also some people just don't tolerate methylfolate and methylB12, they instead feel better on folic acid and hydroxoB12 or cyanoB12. It's an individual thing established from trial and error.

Have a look at this page regarding treatment:

b12deficiency.info/b12-trea...

And there's a support group here if you want to ask any other PA related questions:

facebook.com/groups/1749289...

[Hidden in reply to Hidden]

Sorry I've just seen your comment re the sublinguals. My concern with that approach is how are they measuring whether or not the sublinguals have worked? Because they will definitely raise your blood levels up but they won't necessarily get through to cellular level where needed. The fact that your symptoms are back says to me that the injections would probably be better.

But don't underestimate the effects of low folate, this was a big factor in my own migraines. I am very well (have Graves and PA) but I have hydroxoB12 injections about weekly, and 5mg folic acid at least 5x per week.

If you decide to stick with the sublinguals for now I would suggest speaking to your doc about a higher methylfolate dose. x

[asmile4u in reply to Hidden]

My Doctor does both blood and urine testing to see if it is getting into the cells. I will definitely talk to my doctor about the other types of B12 and the folate dosage.

[Hidden in reply to asmile4u]

There aren't any tests that can really tell you that as far as I'm aware. Once you're taking any form of high dose B12 supplement or injections your levels normalise regardless of symptom relief, including the MMA and homocysteine tests. When it comes to PA, you have to make treatment decisions based on symptoms and only symptoms.

[asmile4u in reply to Hidden]

So if the symptoms get better than I am on the right treatment for PA? If not I should push for the injections? Should I increase the folate first before making that decision? How long does it take for the symptoms to get better? How can I tell if the symptoms are from the PA or from the Hashimoto's not being at optimal medication levels? Sorry so many questions. This just all seems like a guessing game....

[Hidden in reply to asmile4u]

It is a guessing game! Your doctor sounds good, tell him how you're feeling and see what he recommends. I wouldn't wait a month though, if you are feeling bad now give him a call. x

[asmile4u in reply to Hidden]

Thanks!

[Heloise in reply to Hidden]

In the U.S. they actually changed the protocol to oral B12 for the treatment of pernicious anemia ten or more years ago. I had a friend who had PA and she did very well with both sublingual and oral tablets.

[Hidden in reply to Heloise]

That's great that your friend did well. I totally get that in theory the tablets should work, after all the original treatment was copious amounts of raw liver, which is an oral treatment. And the research into high dose oral is premised on the idea that 1% gets through via passive diffusion.

Which is all great, and I believe it would be enough to correct any anaemia. The blot on the landscape is where neuro symptoms are involved, which they usually are by the time you've finally been diagnosed (since diagnosis rates are so poor).

The research just hasn't been done over a long enough time frame. If you look at the Cochrane review for example it was based on a small cohort and they were only followed up for 4 months:

ncbi.nlm.nih.gov/pubmed/160...

It's just not long enough. How were those people doing after a year, 2 years, or 10 years? We need more research. Generally, injections are still recommended for neuro symptoms. Here is a small Japanese study comparing high dose oral treatment with oral plus injections, which demonstrates that the injections were seemingly more effective:

ncbi.nlm.nih.gov/pubmed/339...

But it's such a small study, which doesn't investigate if there was any symptom relief. We need more studies like this.

And there are almost none on sublinguals. I've seem a couple comparing sublingual to oral, and they were on a par with each other. I haven't see any comparing sublingual with injections.

Some of the Canadian Provinces also switched to high dose oral treatment, but I have heard anecdotally that a lot of them are switching their patients back to injections since they have deteriorated.

[Hidden in reply to Hidden]

Meant to post this for info if you are in the US asmile4u:

cdc.gov/ncbddd/b12/document...

Table 6 on page 38 gives an example of treatment approaches. I don't think there's one set protocol in the US, depends on your doctor I believe.

[Heloise in reply to Hidden]

Well, she had taken shots for a year or two and then switched to the oral tabs when the doctor said the new regulation was issued. I didn't investigate, just went on his word. She lived to be 83 years of age if that means anything.

I am trying this product (more for my husband

prohealth.com/shop/product....

This magnesium is also an interesting product. Life Extension seems to be a good company.

prohealth.com/shop/product....

[Hidden in reply to Heloise]

I've got some of those! I've tried hydroxo patches, sublinguals and a nasal spray, and methyl sublinguals, spray and drops. I would have loved to have got relief like your friend, maybe when I've had another year or so of injections I'll try again. I pass them all down to my hubby. He had very low B12 (under 200, lower than mine) but his active B12 and MMA were normal. His homocysteine was a little high though so he's been supplementing B-complex and B12 spray. He has no symptoms, whereas I felt like I was dying. It's a very strange thing, B12.

[Heloise in reply to Hidden]

Wow, you do have a case! My friend started with symptoms with her tongue. She said she couldn't swallow meat. It would just roll into a ball and her tongue felt large. She also said her feet felt like sponges when she walked. Until they saw how low her hematocrit went, they had no idea and then it was rush, rush as if she was on death's door. Are yours, fatigue only, or did you have the above?

I thought the oral hydrox type was brand new....at least they claimed it was, hmmmm.

Goodness, I hope you find success with something!

[Hidden in reply to Heloise]

I have found success - with injections! I'm pretty well now. I had about 22 symptoms this time last year, mainly neuro as I was untreated for 6 or 7 years (due to GP ineptitude and my own ignorance). I can track my first symptoms back to having my first child in 2002. And at that time it did show in my mouth - I was treated for oral thrush (now I know more I'm not sure it was that), and I had a huge infected mouth ulcer (uber painful, wouldn't recommend it). The tip of my tongue was often sore, and the other thing is cracks at the corners of your mouth.

[asmile4u in reply to Hidden]

My General doctor was concerned because I kept getting cold sores and mouth ulcers. I usually would get one a year when I was really sick with the flu when I was healthy, but over the last year I have gotten them monthly. As well as the cracks at the corners of my mouth. Also I was starting to have severe headaches and neurological problems. My heart rate and blood pressure went from being below normal (very healthy) to starting to skyrocket. She was very relieved when we figured out what was going on.

[Heloise in reply to Hidden]

How do you feel about lymph massage? THAT is our detox system and I am going to try doing it myself. This is a YouTube video you may find interesting as she explains the effectiveness.

youtube.com/watch?v=QA-wi0d...(Not working as expected?)

[asmile4u in reply to Heloise]

I will check this out when I get home from work. I am more than willing to give it a try.

[Heloise in reply to asmile4u]

Good, I think this may be another area that our health could be proved upon. Stagnant lymph is not good.

[asmile4u in reply to Hidden]

The theory of the sublinguals is that you don't have to take the massive dosages and it bypasses the stomach. My doctor has me taking my hormone meds. the same way and they seem to be working.

[asmile4u in reply to Heloise]

The Life Extension products were the ones recommended to me by my doctor. Those and Ortho Molecular. There was a study done recently on the effectiveness of brands and those two came out in the top 10. I usually order them on Amazon.

[asmile4u in reply to Hidden]

Thanks for the info!

[sbotwright in reply to Hidden]

Can I ask which part of the country you live in? I live in Scotland. I have had PA for around 5 years now. I began with the loading dose for 2 weeks then I had in injection every 3 months until they discovered I hadn#t had a blood test for 18 months. They then decided to stop my injections for a whole year until I complained an got them back to every 3 months. I beleive it's different treatment for different countries but I assume you are in the UK? How can I get the fequency of of B12 injections increased as my symptoms come back before the 3 months are up and the nurse won't give me them early without the doctors say so. The last time I saw her she said I could have 3 a year which is not enough. I am getting conflicting stories from my GP and the Pernicious Anemia Society. Who do I believe when the GP won't even follow the guidlines meaning they check my blood before every injection. The PA Society seem to think this in unnecessary. Is anyone else having these problems? Please get in touch.

[asmile4u in reply to sbotwright]

I am in the US. I have my blood checked every 6 months. My doctor does not do injections, but does sub-lingual lozenges daily at 5mg.

[asmile4u]

Called my doctor and she agreed that the dosage of my NDT should be raised 1/4 grain. I am to do that for a month and then give her feedback on how I am feeling. Thanks for all the information and advice!!!