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Author Topic: Beta Thalassaemia minor and Usual ferritin levels  (Read 2817 times)
activelazy
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« on: January 26, 2017, 04:32:52 AM »

I am a carrier. My ferritin level is always around 60. Range is something like 12 -250. Is this normal? My health has deteriorated in last 15 months significantly starting with an inflammation to my thyroid gland. I was diagnosed with sub acute thyroiditis. My thyroid was initially over active during illness with a very low TSH and then under active for the time being with reaching a max of 6.5 about 10 months ago. Currently, it is 2.7. My FT3 and FT4 are in the upper range. My current symptoms include pain, mainly peripheral but is in other parts as well at times, nervousness, weakness and light-headedness.

Am I right in assuming that we are generally expected to have higher ferritin  level than normal? If so, does mine indicate effectively a low ferritin. I have read in some places that for thyroid function to be good ferritin should be at least 80-90. However, before illness also, mine was same. It has always been the same and I used to be really well. Never had any problem. I was fit and active. My doctor is not willing to give me a trial of thyroid medicine because my TSH, FT3 and FT4 are all in range. I also dont have antibodies to thyroid elevated at all. They are indicated as negative.

I dont know what to do to get better.

Please answer my question about ferritin. Do I need to raise it? My serum iron tests are normal. Transferrin saturation 32%. Serum iron 19.

I was also diagnosed with slight B12 deficiency (serum b12 was 138 (145 - 900) but that has been corrected by hyrodroxcobalamin injections. Not sure if need to keep taking them or even take them more frequently than once in 3 months. I felt better intermittently. Pernicious A has been ruled out. Not sure what is more important in my case: b12 or thyroid. I did have thyroiditis for sure.

thank you

« Last Edit: January 26, 2017, 05:00:04 AM by activelazy » Logged
Andy Battaglia
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« Reply #1 on: January 26, 2017, 05:16:15 PM »

No, the ferritin is not normally high in thal minors. My experience, based on seeing hundreds of reports from thal minors is that their ferritin is most often on the lower end of normal to below normal. The only exception would be thal minors with chronically low Hb, which would cause iron loading or someone who has been wrongly prescribed iron for long periods. Their ferritin would be higher.

Subacute thyroiditis is most likely caused by a virus and its effects on the thyroid should pass on their own. However, we should be taking a look at your immune system in general for an answer to why this happened.
Almost every doctor will tell you your B-12 is just a little low. For a thal minor, your B-12 is horrible. Studies have shown thal minors do far better when their B-12 level is near the high end of normal, 800-900. I just heard from a member of this group this week who was concerned because her B-12 was testing about double the high end of normal and her D level was high, too. Yet her Hb is higher than it's been and she feels better than she has in a long time.

Thal minor shouldn't be approached the same as normal is. There is a much higher turnover of nutrients than in non-thals, leading to depleted levels of many nutrients, which greatly affects the immune system in a negative way. Has your vitamin D level been checked? Most doctors will say a level of 30 is fine, and some will even claim 20 is okay. No. Thal or non-thal, these levels are minimal for preventing serious conditions. These low levels also prove detrimental to the immune system The nutritional approach to treating thal minor is proven over and over by patients following it. I do not believe there is a medical answer to the issues thal minors face, but that much of it can be alleviated with a good diet and supplements. And, do not take iron.

One of our forum boards is on Diet, Nutrition and Supplements because it is so important in treating all types of thalassemia. This post goes into nutritional suggestions for thal minors. I do not carry thal, but have a Mediterranean background and cannot get enough sun where I live, so I take large doses of vitamin D, >50,000 IU weekly during the winter. It is immensely important. For thal minors with weak immune systems, the very basic musts are vitamin D, Folate, zinc, vitamin C and B-12.
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activelazy
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« Reply #2 on: January 27, 2017, 06:51:08 AM »

Thank you Andy for a detailed reply.

MY REPLY IS A BIT LONG, BUT PLEASE DO READ IT. I NEED HELP.

I am a male 45, slim 178 cm tall always underweight genetically, my dad was as well. I weigh 60 kg. (Dont ask me in stones:)) I have not lost any weight.

Are you happy with my ferritin and iron levels? My vit D was low before I became ill. I had pain in my hands and legs only few days before thyroiditis. I was then given 60000 iu per week for 12 weeks and then told to take 1600 iu per day for life. I understand my B12 was quite bad. When they checked my D at my request they did not check my B12 in November 2015. They checked my TSH then though. It was 1.08. If your TSH is normal they dont check anything else to do with thyroid. Then within a few days sub acute thyroiditis came with pain an inflammation in my neck. My TSH went below 0.05. This was called over active phase. From Feb 2016 under active phase started. In March 2016 my TSH was 6.5 by Endo said it will go back to normal. It was also in March 2016 that I started to get random pains in hands, feet, hips and legs and arms. They were sharp in nature. Then they checked my B12. I wish they did in Nov 2015 when they checked D. I was given 6  injection of B12 over 2 weeks. Nothing improved immediately. Pains became less a bit but what I could call some improvement came only in July.  But has not lasted forever. I have still been getting injections once in 3 months. (as per UK policy). I get some good days (dont mean the best possible like old days - have not seen one of them days in last 15 months) but then symptoms come back within days.
My current Vit D level is 54.

My TSH is 2.7. Some articles suggest that for most people anything above 1 is high. Above 2 is definitely high. Labs say upto 4.5 is 'normal' You know how you say that carriers should not be approached as normal - would it mean that lab reference ranges should also be applied differently to us? Does that make any sense? Could it really definitely mean that upper range of 4.5 for TSH is similarly TOO HIGH for me?

Now, from your experience please help me. I want to get better and I really think that I can because there is no major illness found in me. I mean, I agree I have a weak immune system but other than that, from loads of tests I have had in last 15 months nothing major has been found, luckily. Sub acute thyroiditis is the only main finding. I mean by this that my kidneys, liver, heart etc etc are all still fine. I even had a brain MRI which also came back as normal.
After injections of B12 it rose to 917 in April 2016.

I was also given ferrous sulphate by the way in March as my GP wanted to raise my ferritin to 100. In April, it was 114. But currently its down to 57.  
What does this mean? Did it harm me? I have not got an overload. My iron studies were normal in June 2016 as well. Most readings suggest that (for a normal person I presume) ferritin level should be at least 80 -90 for many reasons including proper thyroid function. Then, how a minor is fine with a ferritin of 50 -60? I find this theory very confusing. Does it mean I am fine with 50? or should I also have a level similar to a normal person to function well?

Ferritin has been:
November 2015 : 63
April 2016 :       114 (after 3/4 weeks of ferrous sulphate). I dont think it harmed me.
July 2016 :          66
January 2017 :     57

Do you think I should consider increasing my ferritin once again. I will be seeing my hematologist on 6th Feb 2017. He is likely to say that my ferritin is fine. He already said my B12 is fine now. It is more than 1400 at the minute. I even got my Active B12 checked which is also above the range. My serum folate is 12 (high in range) Red cell folate also very good and high in range.  I must admit though, that Active B12 is tested after supplementation. But I am not loosing my b12. Could I still have functional deficiency? My Intrinsic  Factor Antibodies is negative. My coeliac test is negative on two occasions. I am a North Indian and Wheat is my staple diet. I dont think I have PA anyway.

I am tempted for two things:
1. Ask for thyroid replacement in case  TSH of 1 is my reference point. My Free T3 is 5.3 (max 6.8) and Free T4 is 18.4 (max 22). (January 2017)

My tsh:  Nov 2015 - 1.08
            Dec/Jan 16 - 0.019 (suppressed) - over active time. Free T4 was still in range, Free T3 went up only slightly.
           March 2016 - 6.5
           April 16 - 3.9
           Jun 16 -  4.5
           July 16 -  4.2
           Oct 16 -   2.5
           Nov -16   2.9
           Jan 17 -   2.7
So, one thing that comes to my mind is that I will not feel better until I achieve a TSH of 1. I have also read that sub acute thyroiditis goes away on its own but takes time (in some small number of cases you can be perm hypo thyroid). Am I? I dont know and at times tend to think that only way to find that out is by getting thyroid replacement and try to bring TSH down to 1.

2. Look at my case as that of functional B12 deficiency and get loads of injections. However, my physician and hematologist both dont think i need them. At least now, with a high serum and active B12. They dont mind giving me one every 3 months.

I am very confused. I am quite tired of pains, burning sensation, nervousness and weakness. I was hoping that effect of thyroiditis, even if slowly, will go away. However, it is not going away. I would not mind if i improved slowly but I should be able to see improvement. But I can not.

I do light exercise/ yoga. Currently also started taking 5mg folic acid recently and multi vit containing Bs and many other things like E, C, chromium, selenium, copper, zinc, etc. Its pharma nord product so the company is good.

Please give your suggestions about ferritin, iron, B12 and thyroid. I have understood that my threshold is lower than that of normal person.

By the way my recent HB is 12 and My HBA2 sometime ago was 4.9%.

I really hope that you can provide some valuable guidance which will help me get better.

I really appreciate the hard work you are putting into this site. Brilliant!

thank you and looking forward.

Ash
« Last Edit: January 27, 2017, 07:37:58 AM by activelazy » Logged
NeelD
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« Reply #3 on: June 08, 2018, 01:32:46 PM »

No, the ferritin is not normally high in thal minors. My experience, based on seeing hundreds of reports from thal minors is that their ferritin is most often on the lower end of normal to below normal. The only exception would be thal minors with chronically low Hb, which would cause iron loading or someone who has been wrongly prescribed iron for long periods. Their ferritin would be higher.




According to above diagnosis method seems Ferritin can be normal?
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Andy Battaglia
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« Reply #4 on: June 18, 2018, 04:15:19 PM »

Ferritin levels can be anywhere in thal minors. My point was that some minors show low ferritin but their other iron numbers don't back up deficiency. This is why an entire iron panel is needed and ferritin alone, should not be the deciding factor if one has iron deficiency.
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Andy

All we are saying is give thals a chance.
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