My story

Although I have posted on here about doing the blue horizon test, I have not actually introduced myself.

About 16 months ago I was diagnosed with B12 deficiency. I have had the usual struggles getting correct treatment etc and am now on 8 weekly injections and I self inject in between. I have several neurological symptoms and my haematologist argues that they can'T possibly be due to my b12 def. I saw a neurologist that did several blood tests (the only thyroid test was tsh) and an mri and diagnosed incomplete b12 replacement but my gp does not agree. The only blood test that came back as abnormal was my ANA and that was repeated and abnormal again. The gp has said no further action. He told me I should stop seeking answers and change my attitude and I will feel better. He said I should accept I have an autoimmune condition and they do not and will never kow what it is and if they did they would not treat it. The symptom I struggle with most is the chronic fatigue, especially as I am doing a degree which involves 12.5 hr shifts in a hospital. If I try to give my gp evidence he says I am being manipulative.

As many of my symptoms could point to hypothyroidism and I have only ever had my TSH tested and the labs refuse all other tests, I have decided to seek the thyroid tests myself. My TSH has ranged from 1.8 to 2.1 so within range according to the trust guidelines. I am unsure the gp will accept the rules or treat me (I will not be seeing the practice partner that told me to change my attitude and said I was manipulative) but I need to start somewhere. The results will allow me to either say yes I believe I have hypothyroidism or I can rule that out as a cause. If necessary I will fight for treatment.

I will come here for advice before tackling the gp if my tests do point to hypothyroidism.

Thank you to those that have responded so far and for any future responses to my questions.

30 Replies

oldestnewest
  • Just make sure your bloods are fasting and done as early as possible 8:30-9am. Good luck on finding answers, and not more questions!

  • Can I do the tests at 7am (was hoping to get them in the post before 9am as I am waiting in from then for an engineer) ?

  • Yes that would be fine..... only say 8:30 as most surgerys open then ....

  • Thank you

  • Symptoms of hypothyroidism and b12 def are similar so can sometime be confusing as to what is causing what, I have both and now SI every two weeks for b12, have pretty much given up on Drs being able to help me. So best of luck in finding your answers .......

  • I am the same it's hopeless x

  • I'm frustrated for you that the senior gp will not take the advice of a qualified specialist. You're feeling ill and that's all that should matter to a gp - failing to acknowledge a diagnosis seems bizarre, and it still shouldn't mean they should give up on you. Most busy doctors take the path of least resistance, this one, however sounds like a total narcissist, but because he's practice head he's probably surrounded himself with weak characters who will just be trying to preserve their own backs: changing practice may be your only option.

  • I changed practice to this one because I was told they were more understanding than the previous surgery - out of the frying pan into the fire I am afraid. Any other surgeries would mean travelling. The only benefit I do get from this new surgery is there are always appointments available (there are 2 surgeries, which helps). He was an awful gp - he upset me then told me that getting upset was another example of my attitude, he did not even give me a tissue. I was going to complain about him and lots of other experiences in that surgery (being told my bloods were normal twice when the results were not even back, being refused hepatitis vaccines for my son after his consultant requested them, having treatment for my sons incurable liver condition delayed because the surgery cannot read what the consultant has clearly written and do not communicate with each other, being promised a phone call that never happens, having to constantly chase the surgery for everything - nothing is simple there, it always takes several phone calls from me before I get what has been requested). I was going to write a complaint but I complained about my previous GP and about my gastro and haematologist and got no benefit from the complaint. I feel they will just consider me a serial moaner if I put in a complaint. Anyway I have vowed never to book another appointment with the gp that was so rude to me.

    I doubt they will act on any results I get so I feel I may have another battle ahead of me.

  • Going down the complaints route won't work, I agree. When you're B12 deficient / hypothyroid it's difficult to control your feelings of anxiety and this should be a red-flag to the GP that your 'behaviour' is just another symptom of a physical problem. I'm afraid that some people cannot join up the dots when it comes to minds and bodies.

    I wonder if there's any chance of getting hold of the neurologist through their secretary and requesting a second opinion to back them up. I'm sure that the neurologist won't be too thrilled knowing that their diagnosis has been ignored by a GP. Surely the neurologist trumps a GP w.r.t. B12-deficiency related neuropathy as they see the symptoms all the time.. and if a second neurologist (with more clout) can back them up they can lean on the practice to have you properly assessed and medicated.

  • I considered writing to the neurologist to tell him what the GP said, maybe I still will.

  • I really do think this would be a good idea. The angle you should try to avoid is one of openly blaming the GP (it won't get you very far as doctors find these things too emotive) - just say that you think he's missed something in your symptoms. It's best to stick to facts - list symptoms and trips to the GP with dates and how you believe that symptoms deteriorated over the time period. Hopefully, they'll arrange an appointment to see you again.

  • Agreed

  • I think uni are aware I am an extremely anxious person as I have had to seek a lot of support re issues at home impacting on uni work (problems with bullying of my eldest, marital issues, sick younger child, social problems with my eldest & of course my health problems) I cried the first time I met my new academic tutor - think that was a shock to her.

  • The sooner your GP realises that he is a public servant and not a superior being the better. Keep digging and wear them down.

  • sleepypuss I am so sorry you are having to battle like this. Your GP sounds a complete an utter ....hole. How dare he talk to you in that way. Disgusting. Someone needs to sort these unhelpful, unsympathetic narcsisstic GPs out. Makes my blood boil. Sending hugs x

  • Thank you

  • I suggest you find a functional nutritionist. They have a much more caring attitude to finding out the reasons. I had full DNA analysis done and it showed I have a negative DNA for autoimmune disease. Nice to know on the other hand I am also low risk for Altzimers, it's a tough decision to find out but gives you the chance to add supplements and make dietary changes to feel better. Hope you get some help soon. I am not sure why endocrinologists hold this title as they only test for t3 and t4 then dish out meds and no information.

  • Sorry for your struggle. Check out stopthethyroidmadness.com re how to test your thyroid hormones. Possible adrenal issue? If you do need thyroid medication, I recommend Natural Desicated Thyroid medication. Good luck!! 😊

  • Thank you

  • I will look into this - are they available in the UK?

  • Great guy at The LONDON CLINIC OF NUTRITION. Oliver Barnett. I really recommend him to anyone with THYROID Issues

  • I live in California, and take WP Thyroid from the makers who also make Naturethroid (a popular brand). I take WP Thyroid because it is more pure with less fillers and dissolves well under the tongue/sublingually. Here's a link that I found in the UK:

    thyroiduk.org.uk/tuk/treatm...

    I would send out a new message if you take this route and ask others in the UK area which NDT they would recommend. Armour is a popular one, however, some brands go through changes and become less effective when they are bought out by new manufacturers and the formula is changed and the medication can become less effective (Happened with Armour multiple times in the US, but not sure about the one in the UK). I think Erfa is a good choice, and I have used that one before. Take care

  • There isn't such a thing! "(Happened with Armour multiple times in the US, but not sure about the one in the UK). "

    In the UK, we have a tiny number of people on Armour Thyroid supplied within the UK - and that is all imported from the USA. There is, therefore, no difference whatsoever between Armour Thyroid in the UK and in the USA.

  • Well, if those in the UK are getting Armour from the USA you need to know that the manufacturer has changed multiple times since 2009, and the results have left the product highly ineffective at times. Fillers changed, etc... And that's a fact!

  • According to the STTM, Armour was rendered even more ineffective after it was bought by another company (Actavis) last year...which is incredible. Instead of going back to the old formula which made people all over the world love Armour, it seems that it is now basically useless...how can not one. but two, pharmaceutical companies, ruin a drug which has been working great for decades...I know some claim there is no profit in drugs like Armour, but how is that possible, given the number of users worldwide...I don't know about the US or the UK, but in Belgium, NDT is incredibly expensive, so there must be something in it for the manufacturer...incidentally, Armour has tripled in price since it was bought by Actavis, and my doctor now has patients who can no longer afford it...which is why my doctor has now switched patients to Erfa which may not be much better judging by comments on STTM and also here:-(

  • I looked at the link that I provided to you. You can get WP Thyroid:

    Westhroid-P

    (RLC Labs, Inc)

    westhroidp.com

    I've had good results with it, and I take it under my tongue.

  • I will post more questions if lab tests prove me to have hypothyroidism.

  • I have received my results and they are all within the normal range apparently. I will put them on here as soon as I get up (in bed because night shift tonight). My phone can'T open the zip file. At least this then strengthens the argument for it being incomplete b12 replacement as the neurologist tested me for so many conditions and all tests were normal, apart from the ANA as I stated before. There is not much left to test me for so it has to be b12 related, despite the haematologist stating 3 weeks of loading doses will cure all symptoms of b12 def so it can'T possibly be due to my b12 def. The medical profession is refusing to do anything other than my 8 weekly injections so I will continue to self inject and take all the supplements I am currently taking. This has helped with some symptoms and I believe the remaining symptoms are due to permanent neurological damage.

  • TSH 3.91 (0.27 - 4.2)

    Total T4 102.8 (64.5 - 142)

    FT4 16.52 ( 12 - 22 )

    FT3 5.52 (3.1 - 6.8)

    Antithyroidperoxidase 12.6 (<34)

    Antythyroglobulin 14.1 (<115 )

  • Does anyone know of evidence based information which states my results point to hypothyroidism and hashimotos I am seeing the gp on thursday (not the narcisist partner) but as they are stated as within range I will get nowhere without evidence

You may also like...