Dead end??

[nursey]

Just wondering if any of you lovely forum people have any thoughts on my problem. Despite several attempts to get my gp to treat my hypo symptoms I have failed because my tsh is normal (3.76). My b12 was low (200, range 180-900) but gp refused treatment. My ferritin was 40 (range 10-200).. I have been taking sub lingual b12 and vitamin d. However instead of feeling better I have new symptoms, incredibly itchy scalp and itchy ears. I even got my husband to check I didn't have nits (I don't!). Sometimes I feel ok but , mostly it's a struggle, terrible joint pain, heel pain and dead legs. I played 3/4 of a netball match last night and am completely wiped today. I also am having an incredibly heavy period. I am at a dead end because I refused hrt and my gp believes I am menopausal. I am 48, still have periods, no hot flushes. So because I won't take hrt they say they ccannot help me. Are there sky other supplements I can take to try to boost me?? I am so fed up feeling like this.

[Moggie]

Your ferritin should be above 70 so maybe you could do with taking some iron supplements but please be mindful that taking too many could cause you problems.

Itchy scalp and ears are hypo symptoms, as is joint pain.

Moggie x

[nursey in reply to Moggie]

I take 1000 iu vitamin d daily. My calcium was 2.2 last month. mY legs feel so dead sometimes I can hardly move.

[marram]

Ah, the wonderful excuse of the menopause! and if you were a man, what excuse would they dream up then, I wonder! If you have hypothyroid symptoms, 3.76 is not normal - for you.

[Hidden in reply to marram]

I can answer that one.. they don't blame anything!

In reality mine was the male equivalent, Hypogonadism, low Testosterone due to years of Opiate pain medication, but plenty are low for less extreme reasons!

[shaws Administrator]

Nursey, I am sorry your GP wont treat your clinical symptoms of hypo because your TSH is below 5 (or hasn't reached 10 as the BTA suggest).

Is it possible for you to have a private consultation? I know it is expensive. Is your vitam B12 supplement methylcobalamin? as that is the best. I am surprised too that your GP ignored your low ferritin level. This is a link re female problems

web.archive.org/web/2010122...

[nursey in reply to shaws]

Thank you shaws, very interesting article. I had some scans last year and then I had no fibroids or cysts or anything. My period is heavy for 2 days then just spotting. I feel awful though. I am taking 1000 iu vitamin d and 1000 mcg methylcobalamin b12. I also take folic acid, vitamin c and evening primrose capsules. My gp said I was 'so normal' there was nowhere to go. My fsh was normal but my lh was slightly raised so hence the advice to take hrt! I cannot afford private at the moment but that may change at the end of the year. I feel sometimes that maybe the gp is right and I am a menopausal hypochondriac!! My calcium was 2.2.

[Hidden]

I think I would be looking towards more extensive blood tests privately before deciding where to go and who to see - free T4 & T3, antibodies, (maybe even Reverse T3), although not many

Doctors are going to rush to treat you, unless they are very very low - that's my problem, leaving me to self treat, but that's not an option unless you are very well versed and researched, and even then it's definitely not for the faint hearted

(Always remembering not ONLY thyroid issue are the cause of ill health!)

On Vitamin D3, I would suggest that 1000iu is not a lot if you do have a deficiency, it often takes more than that when you are genuinely low. Look on Amazon for 5000iu capsules, (or even higher!) they currently are the cheapest I have found. A bit of sunshine in the meantime is no bad idea, just don't overdo it. If in doubt test: vitamindtest.org.uk/

Methylocobalamin @ 1000mcg is not very high either, as it doesn't absorb well either. have a look at the 5000mcg lozenges from Health Monthly (for price, not service!)

I have no experience of supplementing iron (mine is usually higher than I would like it!) but from reading other forum postings, the form of supplement is all important to get good absorption, so I would also be looking into that too.

[Hidden in reply to Hidden]

That should say Doctors are *NOT* going to rush to treat you!

[Hidden]

I can't tell you how it makes my blood boil that your GP has refused you B12 replacement therapy. This is about the 3rd time today I've said this on this forum, but please please do some research on the Pernicious Anaemia Society (PAS) website. Your level of 200 is way too low imo (the range used and the test itself is considered by many to be seriously flawed).

You say you've been taking a supplement, was that before or after your blood test? Was your folate checked? I agree with the above that your iron stores look too low as well. B12/folate deficiency cause enlarged red blood cells, iron anaemia causes smaller ones, so they can cancel each other out on routine bloodwork.

You sound just like me, I have very heavy periods which make me feel so ill, on the point of collapse sometimes. I also play netball (or try to!) and know exactly what you mean about dead legs, sometimes I can't even jump off the ground or run. I'm down to being able to play half a match maximum. My other symptoms are numbness in the hands, lower back and neck ache, fatigue, migraines, gastric symptoms, forgetfulness, the list goes on.

Here is my history: I was actually treated for a B12 deficiency in 2006, when my level was 164.2. I was given 6 injections of B12 over 2 weeks (the loading dose). Followed by oral supplements (might as well have taken smarties) for 4 months. I was then retested, my level had gone up to 343.2, and I was sent on my way (this should have been much higher if the B12 therapy was actually working). The doctor assumed my deficiency was dietary related even though I have never been vegetarian or vegan. I was never offered lifetime maintenance jabs. I trusted my doctor and thought no more of it. Fast forward 6 years to 2012 and I am diagnosed with Graves Disease (overactive thyroid). Having been on carbimazole for nearly a year my thyroid levels are now "normal". However, since I now felt worse than I did before my diagnosis, and a lot of it reminded me of the B12 days, I started doing some more research into Pernicious Anaemia. To cut a very long story short, even though my last serum B12 test measured 310 in March I insisted on further testing, which my private Endo was happy to do for me. I had an MMA test which was elevated indicating B12 deficiency at tissue level. I was also positive for thyroid antibodies and parietal cell antibodies. I am currently in the middle of another loading dose of B12 and will make sure that I get the proper treatment this time (this is not an easy task in the UK).

Please find out as much as you can, but be warned you will know more than your GP about this condition very quickly. You must try and get a proper diagnosis before taking supplements. Your GP may well be open to any extra info/research you can provide. If you can, try and get the Active B12 test, MMA and homocysteine, intrinsic factor antibodies and parietal cell antibodies tests. Some of these might only be available privately? You might have to stop taking the supplements for a while to get proper test results - the PAS would be able to advise you on this. Please don't leave this to chance like I did for 7 years, the damage can be reversed if caught in time.

[nursey in reply to Hidden]

Thank you for your advice, fellow netballer! I did manage persuade my gp to 're-test my b12 and it had gone up to 400 but she refused to test anything else as the results were 'so normal' (is so normal different from just plain normal?). I am going to look at the pernicious anaemia site but need to go upstairs and get my charger unless I can persuade one of my kids to go get it for me! I can play a whole match if I am goal shooter but if am wing attack can only manage half. I feel such a failure a d won't to play properly again. Thanks again for your advice.

[Hidden]

I am exactly the same with netball, I play WD. It's much easier playing GS or GK!!! Supplementing B12 will have skewed your last test, did you tell the GP you had been supplementing? I'm getting out of my depth now so good luck with the PAS. You can read the forum and some info for free, but need to be a member for other things. Another good website is b12d.org.

[Heloise]

nursey, GP's should do this for you but since they don't, this website it a good tutorial regarding the thyroid. stopthethyroidmadness.com/

You might study up on natural progesterone creams.