Really need some advice please!!

So finally got my results after paying £10 grrr!!

My vitamin D has gone from 24 to 88

My B12 has gone from 354 to +2000

My Folate has gone from 5.0 to 10.8

My Ferritin has decreased from 59 to 30?? Could this be anything to do with B12 depleting it?

My TSH was 0.01 (levo) to 0.07 (NDT)

My T4 was 17.0 (levo) to 9.1 (NDT)

With all this in mind there is a 10 week difference from last results to these latest ones.

After nearly 11 wks on WP I am still only on 1.5 grains after 3 attempts to raise. Is the low Ferritin the cause? When I raise I become unwell, hypo symptoms, flu like symptoms/sensitive eyes. No heart palpitations or jitteryness.

Should I get the 4 point Saliva test done or raise my ferritin levels and try again?

I feel okay on 1.5 but not optimal. Am I missing something? I would really appreciate any/all feedback as I don't know whats going on?

27 Replies

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  • £10 to get just those results your gP is a scandal it should only be the cost of printing at most so around 30pence

    Your ferritin is way too low to make any use of the T4 in NDT

    There has to be a reason why its dropped

  • I know I don't understand the only changes since the first results is I now take ndt, liquid iron,(not always religiously but considering I never took any before they have lowered??) High dose B12, B complex, Magnesium and vit C. I don't know whats going on and I am at my wits end!! My full thyroid lab results were pretty optimal on Levo (didn't feel it) now thyroid results wise seem to be going in the wrong direction.

    P.s they were initially wanting to charge me £25 for a couple of sheets of paper!!!! I complained and said I should only have to pay photocopy costs anyway I really needed these results and they refused otherwise. I am going to make a complaint at a higher level as that was the practice manager I spoke with.

  • My husband never has to pay to get his results

    Our daughters surgury charges 36pence a sheet

    You sure need to complain because they cannot charge more than £50 for every bit of your medical notes

  • I never pay for a print out of my blood results, this is shocking news, you need to take action. Does your surgery display a sign stating the charges and did you get a receipt. Go and speak to the CAB and get some good advice. They certainly can't do as they please, this is agains't the law. x

  • They initially wanted to charge £25!! I told them it'd profit making and it's wrong. I needed those results but in the end I paid £10 for 3 sheets of paper!! I am do angry but I had my 2 young children in with me and had to end it there. They also ban prams from the surgery which meant that almost 4 mths ago post c-section I had to carry my baby in, in his car seat with a 2 yr old in tow. They say it's health and safety!! I know it's wrong and that's why I can't and won't let it go but I could have done without all this the way I am feeling to be honest. But needs must!! X

  • Ashley, complain to the Patient Advisory Liaison Service at your CCG about the cost of your results. The practice isn't entitled to turn printing a couple of pages into a revenue stream.

    I don't know why your ferritin has dropped but it is low and you should try supplementing daily. Low ferritin may be why you don't feel optimal.

    FT4 often drops when switching from Levothyroxine to NDT as the T3 in NDT means your thyroid doesn't need to produce or store as much T4 for conversion. Your TSH is low but there is no FT3 to tell whether or not you are optimally dosed.

  • Thanks Clutter I will do, still really angry about it there's a few other things too but it just gets me so angry so I will just make a formal complaint rather than having another rant as it gets me worked up.

    Thank you again for this info was hoping you would reply to this. This is all the doctor would test so will need to pay to get private ones done again for T3 and RT3 etc.

    My hair has started falling out really badly over the past few weeks and this is obviously why. Just really frustrated as I have done well with the Vit D, B12,Folate etc.

    Would taking T3 with NDT help me to raise from 1.5 grains as it's been almost 11 weeks and I don't understand what else I can do?

  • Ashley, try 1/4 or 1/8 grain increases.

  • I tried 1/4 increase and as the day went on began to feel rundown/flu like symptoms/hypo. I have tried 3 times to raise and everytime the same symptoms return, I even left it a few days but got worse as each day went on. I see that most people go the opposite way and get hyper symptoms. So know one seems to be able to know what it is. Reading the STTM book doesn't seem to cover it. So I guess I need to get my saliva test done and continue to try and raise my iron levels whilst perhaps doing my own research. I did get iron bloods done too which I will post tomorrow but the GP says they are fine but hadn't mentioned anything about my ferritin dropping or wanting to discuss it further. Only that he would like to see me as my TSH is low at 0.07. Funnily enough it was 0.01 on Levo and he had nothing to say about that then.

    Thank you Clutter for your input and trying to help I appreciate it.

  • Ashley, are you pooping blood? Or have heavy periods? Both will lower ferritin levels.

  • No my last period was heavier than normal but I now believe it could be down to my b12 being so high it is depleting my ferritin.

  • Hi Ashley 32,

    I can't advise on medication levels, but a charge of £10 for printed information is extreme, my GP does not charge at all for this info, the only time i get a charge is if i request the doctor to write a letter of support when writing to DWP the most ive been charged is about £5 if it's a copy of medical notes dr gives me for free but if requested through administrator i get charged £1.20. I'm in Scotland don't know if different in England/Wales x

  • No I live in England and my surgery doesn't charge no matter how many pages and when I was first diagnosed I was given a whole stack of pages - no problem. I was just asked to come for them in the afternoon when they were quieter. Sounds like they just didn't want to give Ashley her notes in the first place.

  • Hi

    You will find it difficult to raise with low ferritin, so I'd keep working on that & do not increase anything further til this has chance to improve. Your B12 whilst high should be ok, if you have too much your body will pass it out turning your wee pink.

    You could get your cortisol checked but I'd work on iron first & see how you feel in few weeks.

    Good luck x

  • Thanks that's my plan! Will keep you posted and thanks for the advice, appreciate it. xx

  • £10 for a printout is disgusting. I second Clutter's advice about complaining to the Patient Advisor Service. Letters, insurance claims and copies of whole notes - sure, but that's more about the time it takes to go through, dictate, type, photocopy etc. Printing blood results should be as easy as just pressing a button as far as I know.

  • Hi, IMO your folate should sit a bit higher too, about 15 as well as raising the ferritin. B12 is greedy lol.

    My surgery charges. I had all of my notes printed for £10 and now any blood tests are £5 - or £10 if several sheets- hence my getting everything last time in grumpiness lol.

  • I'd suggest online patient access, if your surgery has it.

  • What is the name of the iron product you take?How much iron is it providing?Some liquid supplements are very low in iron.

  • Vitabiotics gentle liquid iron with B12, zinc and b complex. It has 14 mg.

  • I am taking 20x20mg iron bisglycinate from Bulk powders(Ebay shop)& 14mgx2 iron bisglycinate from Healthspan(using them up)I would check on this forum-I was advised to up my iron dramatically & do not have any digestion issues with this supplement.Iron in sulphate form(even in so called gentle Spatone)made me feel nauseous.

    My NHS printout said my iron was normal,but thanks to this fantastic forum I am learning about how important iron,D3,folate & B12 are for hypos

  • Thanks for sharing. Is there anything I can buy in boots or somewhere that would do the job for now. I don't want to hang around waiting but I will order online.

  • Don't know-Boots tend to push Spatone liquid as being gentle on stomach.Try Holland& Barratts?I do click & collect at Argos for my Ebay shopping.Now buying all my Bs in methyl form from Phoenix Nutrition thru Ebay including folate-was taking folic acid before.What a business!

  • Okay thank you for this info appreciate it!!

  • SORRY!!! EEEK!!

    TAKING TWO x 20MGS CAPS OF IRON FROM bULK POWDERS

  • £10 for a few sheets of the information that you g.p. holds ...... absolutely ridiculous ... cash cow me-thinks .... my g.p. willingly gives ALL results for me and my lady if we want them AT NO COST WHATSOEVER ---- I HAVE STATED TO HIM THAT IF ANYTHING GOES PEAR-SHAPED I WOULD HOLD HIM PERSONALLY RESONSIBLE [ as he has a legal responsibility for the health & wellbeing of HIS patients -- and if he is not sure/certain or qualified HE HAS THE OPTION TO REFER TO SOMEONE THAT CAN TAKE THE RESPONSIBILITY ] ....... since then our g.p. has never been a problem and indeed cannot be more helpful for all things and foibles that occur ....alan

  • You are right, I am angry with myself too for not saying everything that I wanted to say to her but I am not feeling great or dealing with stress well although I stood my ground I had my two young children with me so had to leave it.

    I will be going over her head and writing a formal complaint I just hope they follow it up.

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