Cold acting agglutinin!

[Icicles]

I have been told that my blood results are ‘in keeping with a cold acting agglutinin’. Can anyone here help me with information? It seems pretty scant out there, and yet another thing my GP clearly knows nothing about! I’ve been sobbing for about 12 hours now and need to get a grip!

[radd]

Icicles,

Awww …. cry if you need to but try not to be toooo sad. We are here to listen and support.

I didn’t know what ‘cold agglutinin’ was either but google informs it is when antibodies attack and bind red blood cells at low body temps.

Ummm … so as red blood cells carry oxygen from the lungs to all over the body, I guess thats one of the reasons you are feeling so awful .... and why your haemoglobin is low.

Treatment .... no idea but to treat the same as all autoimmunity stuff. Try reducing antibodies to lessen the attacks and look at improving adrenal health which will support the immune system.

[Icicles in reply to radd]

Thank you Radd, that’s very kind.

I left the GP surgery with the letter that the Haematologist had sent her and had to look it up myself. I should apparently keep myself warm! I wonder whether it is something that is linked somehow to Thyroid matters. It seems maybe not.

[SlowDragon Administrator in reply to Icicles]

If you feel the cold, you are likely under medicated or poor conversion of FT4 to FT3

All vitamins need to be optimal for thyroid hormones to work well

DIO2 gene variation is common problem

bluehorizonmedicals.co.uk/t...

[Icicles in reply to SlowDragon]

Thank you SlowDragon, I will look into this. I read something about it on the forum not long ago.

I’ve always been cold, then I started having hot flushes, so spend most of my time quite delighted to be cold, but it’s apparently not good for me if I have cold agglutinin thingy. Have you come across this cold agglutinin thing in relation to thyroid issues?

Thanks again

[radd in reply to Icicles]

Icicles,

Google says cold acting agglutinin can be primary or secondary.

I have been reading your previous posts and going back to thyroid hormones, you have enough. They just aren’t working for you. I would say you shouldn’t have added T3 to NDT as you have now gone over-range. I would have accepted your endo’s idea to add some T4 because the T3 in the NDT you were already medicating would have helped the additional T4 to convert. Also self medicating can be difficult.

So ideas why thyroid hormones aren’t working :

T4- T3 conversion needs iron. Red blood cells require iron, Vit B12 & folate to be formed. Your folate, serum iron & transferrin are still low. Ferritin is ok but could be giving a false “normal” if inflammation was involved.

Could be gut issues. You haven’t mentioned any gut supplements and many with low thyroid hormone suffer low stomach acid. Supplementing Betaine HCL will not only improve nutrient/ iron absorption but help the small amount of thyroid conversion that takes place in the gut.

Have you had sex hormones tested ? You are taking oestrogen but what about progesterone?

Oestrogen dominance can block the action of thyroid hormone by creating too much SHBG (sex hormone binding globulin) that will bind thyroid hormone making it unavailable for use. Also, a lack of progesterone can increase CBG (cortisol-binding globulin) which will make available (active) cortisol low. Cortisol is required to make thyroid hormones work.

I also read that unbalanced oestrogen can make stabilising temps difficult when adrenal gland hormones are running low through supporting long term low thyroid hormone, as eventually there is just no compromise left. Have you had cortisol levels measured ? The most informative test is a saliva 24 hour which measures only the unbound that is the hormone available for use. Also DHEA.

Are you multi dosing NDT ? Many members split their dose between two to three times a day to reduce the rapidity of onset and prolong the duration of the T3 action.

I cried every day for a year until sex & thyroid hormones balanced. I too am on NDT & HRT. Sorry you feel so ill. Sometimes the amount of things we get wrong can overwhelm us but getting thyroid hormones working will help with many issues. It can be hard to keep warm when thyroid hormones aren’t working.

Hope someone can give you their experience of cold acting agglutinin.

.

Low Stomach Acid link

drmyhill.co.uk/wiki/hypochl...

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Saliva Cortisol Test

gdx.net/uk/product/adrenal-....

[Icicles in reply to radd]

Hello radd, thank you for this. I am ordering some more K2MK7, selenium and Thorn Basic B supplement so I will add Betaine HCL to the list and see how that goes.

I am a bit embarrassed to say that I abandoned the HRT. When I reached a dose that controlled my hot flushes, I had put on more weight, my body hurt, and I was nearly sick every morning. I was really reluctant anyway because the Gynae Oncologist who did my hysterectomy told me not to take anything with oestrogen in it when the tumour he took out wasn’t cancerous. And I’m embarrassed because I don’t really know enough about this stuff, and I feel like I’ve let myself down. So I gave up on it, and I don’t know whether that was the right thing to have done for myself, but I hated it and it terrified me. My GP thought that it was the answer to all the things that were going on, so I gave it a try. GP is not impressed that I stopped it after making such a fuss about the dose and having a patch etc. After 8 years of hot flushes I thought that I would do anything.....

Thank you for what you have said about the thyroid hormones and having enough. It was a surprise when the FT4 number went up out of the blue. I read some forum members saying that T4 had not agreed with them and they believed that they had increased weight as a result of taking it, so I thought that I would try to cut it out. My weight has increased steadily since starting treatment which is one of the reasons for my crying. The other main one is that I cannot put one foot in front of the other without pain or feeling exhausted. It’s recently got a lot worse, that may be related to cutting down my NDT and introducing T3. I have thought about stopping everything and starting again.

The link for the saliva cortisol test doesn’t work for me but I will find one and it has been suggested possibly D102 gene test?

Yes I am overwhelmed by having got so much so wrong, so thank you for taking the time to point it all out to me, and it is helpful to hear that you have achieved some balance. Just trying to figure out how to avoid my next error hahaha...

Thank you you have been really helpful

[radd in reply to Icicles]

Icicles,

T4 is often seen as low in people who medicate NDT. Mine is.

It is thought this is because the pituitary gland senses enough of the active hormone T3 and so stops trying to produce more. Hence the thyroid stimulating hormone (TSH) reduces drastically.

The result that is important is the T3 and yours had increased with each NDT raise. Your endo just raised it very slowly but as you don’t have Hashimotos this was probably a safer option when introducing new hormones.

You have already had an NDT brand change. It is not a good idea to stop and start thyroid hormones so persevere with NDT. You just need to get what you have working.

I wouldn’t bother with the DIO2 test as it is useful in confirming a conversion problem in someone medicating T4 only, but you are already medicating with NDT.

Don’t supplement Betaine HCL if you have stomach ulcers. Ask members in a new post for Betaine protocol.

[Icicles in reply to radd]

Good evening, nearly tomorrow morning, radd, thank you for taking the time to look through my posts, that’s very kind. My most recent error has been to drop my T3 out and go with only my NDT today. I felt some relief that I may have a direction in which to go, even though I am clueless about the cold agglutinin. I will investigate Betaine doses with the forum and see what come back. I have an appointment for a blood test and a different doctor to ask for more information about the cold agglutinin and possibly ask for a private referral to a Haematologist.

I will also locate a saliva cortisol test.

My T4 went up, out of the blue. Do you know why that might have been? And, this is something I have talked about with friends a lot, what effect does the T4 that we take and isn’t being used have on us? I wondered does it have an effect of itself when sitting around waiting to convert, or have a side effect that is unhelpful. Or, because it is a hormone, does it have no negative effect?

Thanks again

[radd in reply to Icicles]

Icicles,

You are fixated on raising your T4 levels.

For most, NDT is thought to be a complete treatment. It is true some need a higher in-range T4 level, usually if they are not receiving the small supply of T3 that you are (within the NDT).

Thyroid hormone doses are very individual and you haven’t been medicating long enough to make a true judgement because depending on the severity of your hypothyroidism, symptoms may continue for many months after good biochemical status.

Also, there is the possibility that the cold agglutination may be impeding your recovery or distorting your test results. I have haemochromotosis (iron overload) where genetic variations make it impossible for my body to excrete unwanted iron and this has played havoc with how my hormones work.

Similar to cold agglutinin there appears to be very little available literature regarding the influence of elevated iron on thyroid hormones and it has been trial and error over many years for me to get it right.

You have stopped and started HRT which is known to effect how thyroid hormones work, and have now chosen to self medicate thyroid hormone replacement. NDT is an excellent choice but many members on this forum will tell you recovery or even small improvement can take several months.

In answer to your question, yes elevated T4 levels can have a negative effect on the body by converting to RT3 and distorting healthy T3/RT3 ratios. Low T4 levels lessen these risks. The ratio of T4/T3 in NDT is thought to be suitable for most.

.

I found this link regarding others relating their cold agglutinin experiences.

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coldagglutinindisease.org/s...

[Icicles in reply to radd]

Hello radd

I’m not fixated on raising my T4 levels. I was curious about why they remained the same and then increased, when I understood that it was common for them to reduce and remain low when on NDT. If I was fixated on anything, it was what was happening to all the T4 i was taking which may not have been converting and whether it had an action of its own.

I found some great links and comments on Betaine HCL, so looking forward to receiving mine and trying it out.

I’m sorry to hear about your haemochromotosis. that sounds like another complex issue to balance with the hormone stuff.

Thank you for the link which I will look at shortly. And for the information.

[ndstephens49]

Look up cryoglobins. I have tested positive for these for at least 20 years.

Nancy in West Virginia

[Icicles in reply to ndstephens49]

Thank you, Nancy, I am having blood taken tomorrow and I believe that it will be tested for cryoglobulins, or a particular protein that the Haematologist requested. May I ask, Nancy, do you have a cold agglutinin disease/ syndrome?

[ndstephens49 in reply to Icicles]

I have never been told that I have a cold agglutinin disease.

As I recall, when I researched cryoglobins, I recall them being related to vasculitis, which I do have in addition to clotting issues.

Just sit tight, get your blood testing done, and see what your specialist tells you.

Unfortunately, here in the States, unless you are close to a big city, not very many doctors know much about these difficult issues.

Nancy in West Virginia

[Icicles in reply to ndstephens49]

Thank you, Nancy, I appreciate your support x

[ndstephens49 in reply to Icicles]

Anyway I can help.

Nancy

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Hello Icicles, by the way, I love your name. I am new to HU. I hope by now, you are doing better. I was diagnosed in 2015 with CLL/SLL and secondary Cold Agglutinin Autoimmune Hemolytic Anemia. You can read my story on my homepage. I am sorry to hear that you are having such a hard time finding the right kind of help. It happened to me so I can understand your frustration. This disease is very rare so this is why you will need to find a hematologist who is familiar with it.

I don't know if your CAD (Cold Agglutinin Disease) is primary or secondary yet, but I was treated primarily for CAD with Rituxan which worked for about 3 years. I was able to maintain my hemoglobin at normal levels. I had another Rituxan treatment in 2018 and about a month ago following a bad cold, I had my first blood transfusion with a inline blood warmer because of the agglutinin issue. Yes, you must keep warm at all times.

I see Dr. Davids who is a CLL research specialist and is very familiar with Cold Agglutinin at Dana Farber in Boston once a year just to catch up on the latest treatments and medical advances in the field. I highly recommend him if you can make the trip. Also you might check with Dr. Berentsen in Norway, he specializes in Cold Agglutinin plus there is a new drug called Sutimlimab which is currently in phase III trial which is geared for primary CAD. You can look all this up on the internet.

Wishing you the best.