Not sure if you'll be able to help with this one. I was diagnosed with hashimotos a few years back, it's under control at the moment. I've been seeing an immunologist because I have recurring shingles outbreaks on my shoulder and back (for at least 12 years, I used to get it once a year but last year I had 6 outbreaks). He has put me on acyclovir for 3 months to see how that goes. But I would like to have a baby in the not to distant future so it's not a permanent fix.
The immunologist referred me to a Hematologist for chronic anemia. I have always been anemic (I'm 33) but it's never been investigated. He's did some more tests and my Absolute Reticulocyte Count has come back as 31 (range 50-100). RBC 3.4 (range 4-5.2), Hemaglobin 10.57 (range 12-16), HCT/PVC 33.6 (range 36 - 46). My MCV is 98 which is towards the high end of the range so he has told me to stop taking iron as my red blood cells are enlarged, so he has ruled out iron deficiency. WBC are within range, but Monocytes % is 8.99 (range 4 - 9) so it's quite high. Vitamin D and B12 are optimal.
In addition my IgG subclass 3 is below range. It was 31 in December but has risen to 38 (range 41 - 129).
I saw the Hematologist again yesterday. He said that my bone marrow is not functioning properly as it is not producing enough red blood cells (shown in the low reticulocyte count). He said that this may be due to the recurring shingles and said we should wait 6 weeks and run the tests again.
I'm quite concerned as from looking online it seems that's the only causes of a low reticulocyte count are iron deficiency anemia (which i don't have) or bone marrow failure. I don't really want to wait 6 weeks just for whatever it is to get worse.
Has anyone had similar results? Should I just stop worrying and see what happens in 6 weeks? I'm lucky enough to have private medical insurance and I can get a second opinion immediately if needed.
Thanks so much in advance!
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Mhel
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Poor you, you are going through it, have you had an ANR test? Hashimoto's is one of several auto immune issues that are linked, do if you have one you're more likely to get another. Could be another one, Lupus affects the blood and would account for the shingles. You are in autoimmune trouble, for sure.
Wanting a baby is perfectly natural, but you need to understand that a) it might be hard or impossible to conceive b) you're not really well enough to care for a child and need your rest and c) the autoimmune issues are likely to be hereditary so your child will probably suffer too.
So sorry but this is not going to be easy and you need to think very carefully about the risks to yourself and the ongoing risks to your baby.
Just to say I have Hashimotos (have had since young) and my children (both late 20's) are perfectly well. No immune issues in sight. It doesn't always follow.x
Don't like to say this but mine wasn't diagnosed till I was 60 even though my mum had it, can lie dormant forever or something trigger it depends on genes.
If you have private medical insurance I'd find out the best hematologist in your area and go and see them. I wouldn't wait. I've waited for things before with advice of GP's (have no trust in them at all) and always been a mistake.
Get it sorted now. You need to sort if you're thinking about getting pregnant.
Do you drink, I see you're young, busy social life? Alcohol can make a difference to red blood cells.
What's your diet like? Do you eat meat?
hypothyroidism also makes a difference to red blood cells.
Are your meds optimal?
What was your last TSH, T4, T3 etc?
TSH needs to be under 2 for healthy pregnancies.
Are you gluten/casein free as you have Hashimotos?
Despite all my tests results, I'm not in bad shape. I work full time and have never had a day off sick. I workout 3 or 4 times a week and can run 10k without too much trouble. I'm a good weight for my height. Im following the AIP paleo diet which I find pretty easy, as I'm a healthy eater anyway, but i do have a couple of glasses of wine at the weekend.
I am tired a lot of the time but I put that down to my job as I work 9-6 managing a large team.
TSH is below 1 at the moment. I haven't had a full thyroid panel for a while, so will request that.
It's the reticulocyte count that's my main concern at the moment. I get aches and pains for seemingly no reason, and it feels like my bones hurt rather than muscle ache from exercise.
Anyway I've booked an appointment with a Hematologist for a second opinion this afternoon. I would just like to know what the likely cause is really.
B12 is involved in bone marrow formation I have read - could it be that although you say your B12 is optimal - is it getting into the cells ? The test tells you what is in the blood only
I think there is a company in the UK by the name of MapMyGut. I think you should start taking a look at your microbiome. My interest in thyroid came from trying to put together some patterns in other diseases where I saw thyroid was the "canary in the coal mine" for a number of things. Because doctors are so specialized they do not see these patterns. They look at their own speciality and that's it. Herpes viruses like VZV/shingles can modify the immune system and be involved in complex patterns of infection. With anemia as a co-morbidity (doc speak for another problem) this is another potential indicator of microbiome involvement as certain bacterial genus have "iron acquisition" stategies. If you aren't familiar with the microbiome and its connection to health you can Google it and get thousands for papers from recent research. Dr. Tim Specter in the UK is a leading researcher in the field and the founder of MapMyGut. I believe they are setting up practitioners in the UK who can order the kit and take a look if this might be impacting your thyroid, immune system, shingles, etc.
I don't know anything at all about bone marrow disorders, so the following possibility could be a complete red herring, but it's worth ruling out....
High MCV and low haemoglobin points to possible B12 / folate deficiency anaemia. Note that active B12 and methylated (active) folate are not measured in standard blood tests. Therefore you can have a surfeit of unmethylated (inactive) B12 and folic acid circulating in the blood stream that isn't getting absorbed, but looks 'good' on blood tests. Seeing as you're not mentioning many of the classic B12 deficiency symptoms I'm leaning towards folate deficiency.
For Hashi's sufferers it's generally a good idea to supplement the methylated forms of both of these b vitamins, especially since there is a link between Hypothyroidism and high homocysteine levels and you can bypass a lot of conversions by taking the readily absorbable forms. It's really important to get those high homocysteine levels down if you have them (via methylation cycle using B12 and folate) as homocysteine causes inflammation if left unchecked and should be recycled into methionine for energy, or it can be broken down (via the transulphuration pathway) and excreted.
In fact, if you've lived in Canada, New Zealand, the USA or Australia you have probably been consuming synthetic folic acid in your diet at some point (as they fortify the flour with it) or possibly taking it anyway if you're hoping to get pregnant. This may be fine for many, many people, but can be problematic for those with a MTHFR mutation that prevents them from making the enzymes that can convert folic acid into useful methylated folate which would have been able to lower homocysteine AND manufacture blood cells.
I'd ask your haematologist to check your homocysteine levels..
I was really interested to see your post as I too have Hashi's and have been battling with shingles. Mine too was on the back and shoulder but I had it without the rash (Internal shingles). I too think it is connected. When I was,in retrospect, at my most undermedicated for Hashi's, I woke up one morning with shingles. I had to stay on a a full strenght dose of Acyclovir for 6 months to finally bring it under control. I was told that having a faulty auto immune system probably contributed. I was 47 when I got shingles,which is pretty young I understand.
I also should mention that I too had concerning blood test results when I had both shingles and Hashi's. That led me to suspect B12 problems. I contacted the "B12 support group" and got excellent help and advice. I was eventually able to rule it out as an issue. Perhaps you could try contacting them?
Blood test results can throw up a complicated picture and in my experience are best interperated by a consultant who can see how they all interlink. For some reason all of my blood tests normalized once the acyclivor finally managed to control the shingles virus in my system and the pain had subsided. As I mentioned earlier,this took 6 months in my case. My overall impression now is that I had some sort of system collapse. My Hashi's was not being treated and that left my immune syestem on it's knees and that's when shingles jumped in and grabbed it's chance.
By the way, the NHS guidance on optimal levels of Vitamin D is much lower thanthe level recommended by the latest research at the Vitamin D council (see their excellent website). You will find easy to read advice there on what your true optimum vitamin D levels are and exactly how much vitamin D oral spray (the oral spray is according to them the very best way to raise your levels) you need to take in order to achieve them. I have to take much more than was recomended under NHS guidelines to get an optimal Vitamin D level. I understand that is because how we each synthesize Vitamin D can vary somewhat.
What do you mean by the statement that 'your Hashimoto's is under control'? Have you been able to reduce your antibodies? If not, have you investigated the restorative/functional/environmental medicine approach to getting rid of antibodies? You won't hear that from the majority of allopathic MDs.
The reason I ask is that I had gluten intolerance my entire life, until I was 57, and it wreaked havoc on my health - including shingles. Dietary changes and nutritional supplementation eliminated the problem, and my immune system is working much better. Hardly ever get anything now.
Supporting a pregnancy while having an active autoimmune condition, sounds risky to me.
Hi Eddie, it's my shingles are that are now under control...not my Hashi's. I think that Hashi's is an ongoing issue for most of us! (My anti bodies are down to single figures at the moment though.)
Like you,I too have been on a strict gluten free diet now for several years now.
I am finding that I need to be on Acyclovir constantly or the shingles virus revs up again.
Are there any websites in particular that you recommend I look at regarding dietary changes and nutritional supplementation to boost the immunne system? I will certainly take a look. Thanks!
I wouldn't like to comment about pregnancy with Hashi's as I never went through that and don't really know anything about it.
Shingles can be helped by taking vitamin B1(Thiamin). New living bone cannot be made unless Vitamin K2 is taken, you may be short of this, but it cannot be taken with warfarin, coumadin, blood thinners etc. Personally I prefer K2 to any drug blood thinners as it keeps blood in correct balance and totally prevents thrombosis clots whilst still allowing unwanted bleeding to stop quickly. There is no known overdose. However, in the case of a mechanical heart valve replacement warfarin is mandatory as if any blood settles on the metal parts of the valve it can cause a fatal blood clot. In that situation the blood has to be kept permanently thinned. Hope this helps Make
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