So fed up with feeling like this...

[BlueMundo]

I have had hashi underactive thyroid for 17 years and following tests in July I have also found I have low B12, low Vit D and low ferritin. I have not really felt well since I became pregnant with my first daughter 23 years ago. The main problem through the years has been fatigue and lack of stamina. Incidentally, I am veggie. I haven't had any alcohol for over 10 years and have never smoked.

Since I have dropped T3 from my thyroid medications in July and now just take Levo I have been suffering from increased breathlessness accompanied by extreme fatigue. I've also had an increase in headaches, even when I wake up in the morning. I thought these symptoms were due to too much Levo and have subsequently dropped my dose.

I am still suffering from debilitating breathlessness and fatigue. Today I feel like crying as I'm so fed up with feeling this way.

I have been on a regime of vitamin and mineral supplementation for iron and all the other vitamins and minerals I have read I should take. I have tried B12 patches and sublingual tablets but I'm wondering if these are just not working and perhaps I should try injections?

I plan to see my doctor and ask him to suspend his panic attack theory as being the cause of my breathlessness and consider a course of B12 injections. Last time I saw him he gave me tablets for B12 as he didn't want to give me injections (being slow, I didn't ask why he didn't want to but I shall be asking next time).

I'm so fed up of struggling to have a normal life.

Any advice would be gratefully received. Thank you.

BM

[Gambit62 Administrator]

When you say you are a veggie - what exactly does this mean - fish and dairy are both good sources of B12 so if you have a deficiency it is unlikely that the cause is diet if you eat these, which means that the cause is malabsorption rather than lack of B12 in your diet.

Opinion differs as to whether it is really worth exploring what might be the cause of a malabsorption problem as treatment is the same whatever ... and definitely isn't tablets (though malabsorption doesn't necessarily mean non-absorption so flooding the guts with very high levels of B12 there is a small chance that some will get through.

Yes, definitely ask the doctor why he didn't want to try injections. It may be that he wasn't sure if it was dietary so was trying to rule that out (which may have been complicated if you have been using sublinguals and patches as these may have raised your B12 levels but it won't be possible to say if it was the supplementation or the tablets). In any case it sounds as if you didn't really notice any difference from the tablets he gave you - so try to make that clear.

Do you know exactly what your B12 result was? Also do you know what B9 (folate) was?

It may be worth getting serum B12 done again - doctor will probably want to do this anyway - but given the self-supplementation using ways of getting B12 into your system that don't involve the gut - it is likely to be inconclusive ... unless it is still coming out as low ... in which case go for the injections.

You may have a fight on your hand as what labs regard as low is actually very, very low and people can be symptomatic at levels well into the normal range.

It might be useful to tick everything on the attached list of symptoms that you feel relates to you - even if it also relates to the thyroid problem ... having one problem doesn't preclude symptoms being caused/made worse by another

pernicious-anaemia-society....

and take it with you.

It can take a while for B12 to get your body to the point where all the damage has been heeled - a lot of people report that they need about 6 months before they really start to feel better ...

It could also be the case that your body is having problems processing the form of B12 you have been using - though my guess is that it is probably methylcobalamin which is generally the one people respond to best.

In terms of supplementation - nasal spray is an alternative if your GP doesn't agree to injections. In one study 80% of people reported that they responded well to this

[Hidden]

Being out of breath I associate with iron def, as your serum ferritin was low you may well need an iron supplement besides B12?

[BlueMundo in reply to Hidden]

Hi Marre, I've been taking a GP prescribed iron supplement since July and not noticed any significant improvement. Am I hoping for a miracle for symptoms to improve in this time frame?

I usually have extreme fatigue and a headache with the breathlessness. Is this how the breathlessness with low ferritin presents itself in your experience?

Thanks for taking the time to reply and I look forward to hearing from you if you have time.

BM

[Hidden in reply to BlueMundo]

Hi BM,

Re:"extreme fatigue and a headache with the breathlessness. Is this how the breathlessness with low ferritin presents itself in your experience?", yes headache and tired, breath less and brittle nails, dry hair and lack of appetite, night sweats are what I associated with iron def. But we all are different. I used to be fine again after 3-4 months of prescribed iron supplements, if you are noticing no improvements since iron supplements from July onwards then its something ells in your case, you should go back to GP, B12 def and or folate def may be playing a part or your thyroid meds are not optimum, or something ells. It is quite common for thyroid patients to have low stomach acidety which can cause bad absorption of iron, and eventually B12 plus other (B) vits, Just walk out the door mat at the surgery, I know its difficult, but your GP can not mind read and needs to know you are no better on current treatment.

It may be worth you finding out if the B12 tablets have done anything to raise your serum B12, if not it may be worth having the active B12 test as with thyroid problems serum B12 can read higher than the active B12 see:

active-b12.com/content/acti...

B12 deficiency caused by hypothyroidism?

Patient SE, an 87 year old man, presented with shortness of breath and anaemia.

Hb was low, MCV was normal and TSH was elevated indicating hypothyroidism.

Total B12 level was 170pmol/L indicating sufficiency.

Normal RBC folate and serum folate indicated that Iron status was normal and the anaemia was presumed to be due to the hypothyroidism.

However, the Active-B12 concentration was only 4pmol/L indicating severe B12 deficiency.

Conclusion:

Although the Total B12 level was normal, the Active-B12 level was severely low showing that the patient was B12 deficienct. Hypothyroidism patients can have this discrepancy between Total and Active B12 levels.

Info about active B12:

active-b12.com/What-Is-Acti...

This is where you can have it done, you need GP to right a request letter and if you can get to St Thomas hospital in London it costs £18,-, but apparently posting options exist etc, see:

viapath.co.uk/our-tests/act...

I hope this may help you further,

Kind regards,

Marre.

[BlueMundo]

Hi Gambit62, thanks for your reply and link.

I am a veggie who eats prawns a few times a week, fish rarely, eggs a couple of times a week, cheese and yoghurt a few times a week. Milk in hot drinks is about it really.

My blood tests from July 2014 were:

Serum B12 217, normal range 211 - 911, optimal range 300 - 911

Serum Folate 4.3, normal range 3.4 - 17.5, optimal >3.4

Ferritin 11, normal range 10 - 232, optimal 27 - 122

I found the info on the link you provided very interesting. Although I don't have all the symptoms, the balance and dizziness stood out. I have had scans and tests for the balance and they came back negative. A possible correlation between insufficient B12 and these have not been explored by the GP. I shall mention this when I see the doctor next week.

I would imagine a retest of B12 would provide a much higher result as I've been supplementing. Would it be worth asking my doctor to test for active B12? Would it be reasonable for my GP to consider a trial of B12 injections?

Where would I get B12 nasal sprays from? I looked on the web and could only find one on a US site and it came with warnings about possible dangers of using it ie with underlying disease where too much B12 could be dangerous.

Thanks again and I look forward to hearing from you if you have time.

BM