Hi little bit of advice please, I've recently been diagnosed with pernicious anemia so having jabs(managed to get them every 8 weeks at the moment) also have fibromyalgia,low vit d treated with tabs,low end of normal test results for iron (around 14-20 over last 4 years range =11-30 )ferritin (between 7-21 over last 4 years range=14-186) folate (5.8-6.3 range=4.6-18.7) which ive managed to get medication for after harrasing gp ( for help with b12 jabs)
Found out both sides of my parents family have thyroid problems(mums sister (was hyper but then hypo), 3 of dad's sisters and 2 cousins all hypo) Ive always had slow metabolism struggle with weight I now have thinning hair,eyebrows, low labido,energy many others I understand it could just be a cross over of other complaints but having telephone consultation Tuesday so would like to be bit more informed.
I've only ever had tsh tested for thyroid which has come back over the years as 3.4, 1.78, and 2.05 (range is 0.3-5.5)
With the consultation I'm going to ask for bloods to be done and to include
Iron, ferritin, folate, vitamin d and calcium (with being on meds and aware that these shouldnt go to high) unsure of what to ask for with any others and the thyroid issue though
Any advice would be welcomed thank you for reading
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shortytlc
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Hi Shortytic. Oh dear, I'm sorry that you're having such a tough time at the moment.
It's good that you've posted on the thyroid forum because they're the best people to give you advice about thyroid issues. I expect that they'll tell you that testing TSH alone does not give a true picture of thyroid status....and that felt suggest that you ask for TSH, FT3, and. FT4.
In addition, you should ask your GP to test you for thyroid antibodies (TPO and Tg and also TSI. This is because people with one autoimmune condition (PA is an autoimmune condition) often develop other autoimmune conditions and Hashimoto's thyroiditis is often present in those who have PA (I think the figure is about 10% - 20% - but I could be wrong).
You're right about the symptoms of B12 deficiency and crossover with the symptoms of other conditions, so it might not be easy to sort out exactly what's causing your current symptoms. Getting a full thyroid panel is a good place to start and the folks on the thyroid forum can help you interpret the results (my understanding is that GPs are often not very good at this). 😣.
About your PA and B12 deficiency: Reading your previous posts and what you've written above it sounds like you may have had neurological symptoms when you were diagnosed with PA and I'm assuming this is the basis on which the GP has agreed (perhaps eventually) to give you eight weekly injections.
However, it looks like there may have been a missed step in your treatment regime. People with neurological symptoms, upon diagnosis, require a more intensive regime of B12 injections (following the six initial loading doses, those with neurological symptoms should receive every other day injections until no further improvement - sometimes for many months, for up to 2 years.
If you did have neurological symptoms when you were diagnosed and you did not receive this regime of injections, your B12 deficiency may have been undertreated and if this is the case, some of the symptoms you are now experiencing may be due to this under treatment.
I wrote quite a long reply about the under-treatment of B12 deficiency this morning, so here's a link to that post (reply is the second one down). The reply also contains links to information that will be useful to print and share with your GP if you want to make an appeal for more frequent B12 injections (i.e. the every other day neurological regime, if you are still suffering from your neurological symptoms - or if they return it before your next injection is due. Here's the link:
I also note that you have previously been diagnosed with fibromyalgia. Not sure if you're aware but B12 deficiency is often misdiagnosed as fibromyalgia (ME, CFS, Multiple Sclerosis, depression, anxiety, hypochondria... and many other things to). Not saying that this is pertinent to your case but it certainly worth considering...and frequent B12 injections have, in some cases, been shown to help relieve the symptoms of fibromyalgia.
About the iron - good idea to get the ferritin levels done again. Yours as if they've been quite low for some time (my levels need to be at 80 for me to begging to feel well - my GP would prefer them to be around 100. When they were at 14 I had quite severe symtpoms of iron deficiency anaemia).
You also mention iron, so I assume your GP has previously done a ful iron panel and is going to do so again (serum iron, TIBC, saturation and transferrin)? (Ferritin levels we only part of the iron story: a full iron panel is the only way to asses true and status).
Not sure what medications you're on and how these might require 'levels' to be 'kept low' (as above) - calcium, vitamin D, ferritin, iron and folate can be problematic if too high, but also problematic if kept too low, so,it's often quite difficult to get this right. Perhaps you could discuss this with your GP and agree what the right levels are for you, taking into account any medications you're currently taking (but keep in mind that if your folate levels are too low, the body won't be able to utilise B12 properly, since B12 can only be processed properly when adequate levels of folate are available - be 12 and folate need each other, they work together).
Anyway Shortytic, not sure if any of this will help, but hope it does 😀. And the folks on the thyroid forum will be able to say more about your thyroid problems then I can.
Good luck with your GP, please let us know how it goes, and post again if you have any more questions or need any more help.
Thanks for your reply had a good read through all lots of good info as always , sorry only just got back to you my daughter had an operation yesterday so been bit hectic. Well had my consultation hmmm gp didnt recognise the link of b12 iron ferritin and folate and just said my ferritin wil be high as I'm on ferrous sulphate so would be a waste of time basically! also i said about my levels of 14-20 in ferritin over last few years her reply= it's fine!! Mentioned Martin hooper and pA.society didn't seem to know anythin grrr tried to dismiss me but I stuck to my guns said fine with vit d and calcium as they would need to be kept an eye on. mentioned thyroid and family history she replied labs will only do tsh if the lab sees anything dubious the will check the other,s docs can not ask for a full screen !! grrrr head brick wall comes to mind !!!
So looks like I can have tests for
Tsh, iron, ferritin, folate vitamin d, calcium fbc really do feel like giving up.
And yes your correct they did miss a step in b12 treatment and they've only agreed a trial run of 8 wk jabs after I cited the nice guidelines and he consulted other partners within the practice.
Oh dear shortyic, hope your daughter makes a swift recover. As to your GP appointment - how frustrating!
Trouble with a trial run of eight week injections is that if it doesn't make you feel better, they'll think the trail has failed.
I really cannot understand why GP's cannot prescribe the correct treatment when shown the guidelines and evidenced that explicitly state what it is (mini rant over).
It is a fact that many people with PA are not able to get their GP's to prescribe their B12 injections frequently enough to get and keep well, neurological regime or not. The frequency required differs with each individual (nobody knows why).
People here often decide to self-inject B12 in order to get and keep well, when all else has failed with their GP's. So, if this is a route that you eventually decide to go down, it's something the folks here can advise about (where to get B12, syringes etc.).
About the the thyroid tests - I understand that folks in the thyroid forum often get their thyroid tests (full thyroid panel) done privately, for the very reason you've just discovered 😣. Details about this can be found on the thyroid forum.
Finally, doesn't sound like you're GP's very helpful - ever though about changing (though no guarantees that a new on would be any better - just a hope that it would be so).
Good luck, post again if you need any more help and let us know how you get on 👍
Might be worth seeing if you have had a full blood count recently. There can be useful clues on FBC as to whether a person has iron deficiency, folate deficiency or B12 deficiency.
Low iron can lead to small red blood cells (microcytosis). Low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis).
A person with both low iron and low B12/low folate may appear to have a normal MCV (Mean corpuscular volume) on FBC because the effects of low iron mask effects of low B12/low folate.
Info is also in "BSH Cobalamin and Folate guidelines", about a quarter through document.
I'd suggest reading BSH Cobalamin and Folate Guidelines if you're in UK. Gives guidance on diagnosis and treatment of PA and B12 deficiency. Some UK GPs may not be aware of this document.
Will get hold of those books asap thanks for listing them, and foggyme go ahead and rant that's what I've been doing all day. My pharmacist seems to know more than my GPs , unfortunately mine is quite a big surgery they joined up with another around 7 yrs ago and then another last year (don't know what they are like) and trying to get appointments is a nightmare even worse trying to see the same one. Will let you know how my bloods go appointment not till 2 weeks though
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said fine with vit d and calcium as they would need to be kept an eye on. mentioned thyroid and family history she replied labs will only do tsh if the lab sees anything dubious the will check the other,s docs can not ask for a full screen !! grrrr head brick wall comes to mind !!!
Tests needed for daughter already supplementing with injectable b12
MCH has gone over-range again, but ferritin low at 28, any advice appreciated please?
Supplementing folate levels whilst having loading doses B12
