Have been SI since end November. Balance and swimming head much better but last week have experienced shortness of breath/air hunger. Feel at times like I'm suffocating and having problems walking up even the slightest of hills. Supplementing all the cofactors and ferritin now 49 and folate 23.4.
Emailed Dr C last week with all my blood results. He diagnosed by email under active thyroid and advised that I could buy thyroxin Henning from Goldpharma.com.
Wanted thyroid panel checked by gp, first one last week refused. Results back today of 3.07 but was non fasting compared to fasting in Oct of 4.13 (had been 4.95 in Feb 16).
Has anyone in uk bought thyroxine online or should I pay for private thyroid panel? Other blood results show low phosphate 0.75 (0.8-1.5) and low lymphocytes 1.4 (1.5-4). Googled and both refer to low vitamin d which Dr refused to retest as already done Oct last year. (70).
MCH has risen from 32.2 to 33.3 (27-32). MCV about the same at 95.4 (80-100). Is my SI treating my b12d enough?
The lovely Marz on this site did mention a couple of months back that my thyroid was struggling but at that point, I was concentrating on treating the b12d and ensuring I was taking all my cofactors. It was all too much for my tired brain to then add something else into the equation but Marz if you're out there your help would be very much appreciated along with anyone else's! Thank you.
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Highland49
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raised MCH suggest that your red blood cells are getting rounder rather than becoming normal again - this could be related to B12 deficiency or it could be a folate deficiency.
If your red blood cells are round it means they aren't as good at transferring oxygen from your lungs to your cells which would explain the breathlessness.
Thanks Gambit, I thought I'd try PAS first as this is where my journey started but will also now post on the TUK forum. As I've been SI b12 for nearly 3 months, I thought I'd see some improvements in my MCH. With the breathlessness becoming more of a problem, I thought initially it was a good sign of repair but I move around so much worse than before I started SI.
Is my folate too high and possibly not getting absorbed? My folate has been in the 20s for last few years, probably due to supplementing with a b complex but had reduced to 19 last October when I'd been off the b complex for some months. Now taking folate not folic acid in a good quality multi and continuing to eat liver once a week.
if your folate is good then that suggest that there may be something else going on. It may be that the methylated forms of B9 help. - sorry didn't see that you had included folate first time I read the post.
It could be a functional deficiency resulting from raising serum B12 with the injections - but if that is the case then it can be resolved by increasing the frequency of B12 injections - which is okay as B12 isn't toxic.
I'm pretty sure that hypothyroidism wouldn't be connected to macrocytosis.
Your TSH is on the high side, which could indicate that your thyroid is starting to struggle, however, TSH is actually a hormone that is produced by the pituitary gland to stimulate the thyroid so is a long way from telling the whole story - the tests that Marz lists below are the ones that are really needed to really test the hypothesis that thyroid is also involved.
If you can't get your GP to do them you can get them done privately - and you can get details on TUK
Thanks Gambit. I inject every other day so hopefully once I've reached 4 months of SI, things will have improved. I now need to pursue my thyroid and have private tests. Seeing a different GP on Monday but I know from experience that they stick rigidly to the results.
The above link takes you to our earlier discussion - Gambit62 Hidden - a reasonable and pretty fair discussion
Your TSH indicates your Thyroid is struggling - which of course Dr Chandy would be aware of. A TSH over 2.5 indicates the thyroid is struggling. See link below ...
[In my opinion]* The GMC is not interested in anything that helps people to be well - If in doubt I suggest you pop over to the Thyroid UK Forum and READ. Even my own Bio could be of interest if you are interested ....
These are the tests required - only through Private Testing with Blue Horizon or Medichecks - through Thyroid UK .... TSH - FT4 - FT3 - Anti- TPO & Tg. Also test - Ferritin - Folate and VitD.
Sorry just noticed your VitD - needs to be around 100 - are you supplementing ?
Please - do ask if there is anything I can do to help. Clicking onto my name above you can read ALL the many posts and Replies I have done over the years - happy to help
Thanks Marz, I appreciate that it's only because of your health battles that you know all this so well but it is good to have you on board. I've now read through again your replies from 3 months ago. I think I was so hoping that after starting to SI b12 that all my symptoms would miraculously improve and then became so bogged down with all the b12 stuff.
As I mentioned to Gambit, I thought the worsening SOB was a good sign of repair but my husband has been reminding me that I shouldn't feel this much worse. Our stresses are still there, his redundancy and still not working but probate sorted following family bereavement. I've been studying due to a career change so juggling learning about all this with learning about dementia and working zero hours contracts. A recommended builder who ripped us off. No, must stop there!
So now I need to get my act together and order the private test. Will be optimistic about GP appnt on Monday and then will order that night. Thanks again Marz, I so appreciate the time taken out of your day to help me. I hope all is well with you.
Just a quick note to say thanks again for the info and links. Have received my results, TPOs are showing 365. Now have private appnt with endo on 18th April.
Actually I can diagnose an under-active thyroid by watching Question Time on i-Player - there are simply 1000's out there - both on the panel and in the audience. Diagnosing was once an art - the art of diagnosis - long before testing became the norm
What are the contraindications ? - you forgot to mention them .....
The GMC is interested in many things that prevent us from becoming well ....
There are many advisors - scientists and researchers - on the TUK forum who are very knowledgeable and is Marz, who has pointed to 70,000 members desperate for better treatment.......
To illustrate, this is just one example ! Approx. twenty years ago, after I'd had frequent consultations with my doctor, I was eventually diagnosed with two leaky valves, high blood pressure, high cholesterol, etc, I researched leaky valve (PFO) on the internet and eventually came across research linking it with Hashimoto's autoimmune hypothyroidism.
Meanwhile, serendipitously, my GP retired and new GP, thankfully, listened to me when I asked her for a thyroid test and admitted she did not know enough about the condition. The test established that I was severely hypothyroid and levothyroxine prescribed.
It was whilst accompanying my sister to see Dr. Sk. (thyroid expert) that he told me on the way out I needed to increase my dose of thyroxine to 150 mcg JUST BY LOOKING AT ME - and not because I was overweight, which I've never been.
Fortunately my GP was happy with this after I assured her I would take full responsibility, as blood pressure and cholesterol reduced and there was no need for any other medication other than thyroxine.
I am eternally grateful to brave and dedicated doctors like Dr S (I was not even his patient!) and Dr Ch, who sadly, were maliciously hounded by the BMA for being experts in their field and caring more about their patients than sticking rigidly to flawed tests - something we are all familiar with on this forum !
I had obviously been hypothyroid for a long while before finally being diagnosed and the various strong medications given for heart. high BPand cholesterol caused dizziness, anxiety and other symptoms which were completely disregarded. Last heart scan two years ago revealed only the one PFO which I'd had since childhood.
I can only speculate that adequate thyroid (NDT) and B12 medication healed the second one.......
PS It's not surprising that Dr Ch was able to correctly diagnose thyroid disease. As an experienced expert in autoimmunity/B12 deficiency, having seen many more cases than most GPs in this country, he would obviously be aware that both diseases often coexist.
It was an Indian doctor in my sister's surgery who eventually prescribed the more frequent B12 injections our family had been battling for.
Yes he's definitely a pioneering doctor and lovely to hear a good news story about your sister. It seems that so many people struggle with treatment for something that costs so little and with no side effects.
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