What to do next?? more of a relationship with surgery receptionist than G.P!! Latest bloods results.

[sazzles6]

Ok so my second set of blood results came back last week my TSH is 4.13(0.35-5) and my T4 is 15.5(11-23). these I think are fairly good after only being on 50mg daily of levothyroxine for 6 weeks. I've also had another set of other bloods which my G.P requested when she diagnosed me. she said at the time that along with autoimmune hypothyroidism other diseases can crop up. I asked for a copy of the results but honestly I cant really make head no tail. However it does say at the top of the page. tell patient - NORMAL

Vit B12 is 213 (200-900) this seems really on the low side of normal,

Folate-7.5(4.60-18.7),

Ferritin 38 (12-300)

Serum lipids: Cholesterol 4.92(<5.20)

!triglycerides 2.45 (<1.71)!

!HDL cholesterol level 0.98 (>1.42)!

LDL cholesterol level 2.85 (<3.90)

cholesterol/HDL ratio 5.1

Liver function test. These are all in the centre of the ranges so I'm no worried about these.

HbA1c levl -IFCC standardised 32

The surgery receptionist is lovely and tells me I have nothing to worry about and that everything is normal. BUT and here it is.......................

My G.P knows that we where thinking about having another child as we discussed this when I was diagnosed and she prescribed me folic acid! From what I have read though is that my TSH needs to be at least 2 or under for any chance, she also is aware it took 3 years to conceive my second child and at the same appointment she said it was more than likely because I was hypo. I had a chat to the receptionist and she said to speak to my doctor HOWEVER she is on holiday until 19th august....grrrrrrrr.

My B12 would also appear to be just about within range and since these results I've started taking a vitamin supplement and feel much better but can I not get anything prescribed as these are expensive......

Can anybody shed any light n what my other results mean???

When I questioned whether I was Auto immune or not I was given a print out all about hypothyroidism and that the main reason for it was auto immune. But that doesn't clearly state yes or no!!

Ohh and then to top it of, I went to collect my prescription of levothyroxine. It was another 8weeks of 50mg but I don't know if I've to have another blood test or not........

Sorry for rambling so much, millions more questions.

Sazzles xxxxx

[shaws]

Someone will comment on your blood test results but I will say that your B12 is far too low. It should be towards the upper level. You should supplement with methylcobalamin B12 - not cyanocobalamin and you cannot overdose as excess is excreted in urine. You can get doses of 1,000 to 5,000. You can get lozenges or sublingual or ordinary tablets.

Our range for B12 is too low.

amazon.co.uk/s/ref=nb_sb_no...

youtube.com/watch?v=klobLSx...(Not working as expected?)

[Hidden in reply to shaws]

This is interesting , poor Doctor , hounded by the nhs , This reminds me of another wonderful Doctor who gets hounded by the GMC , when he's making his patients well and other doctors on the NHS are keeping their patients ill

[sazzles6 in reply to Hidden]

he makes a very point about vit B12 and how much cheaper it is. xx

[Hidden in reply to sazzles6]

Yes he does Sazzles6 , I have been amazed at what I have learnt on here in just a week , the NHS is very square and inflexible

[Hidden]

I despair that you have been given folic acid by your doctor when your B12 is that low, I really do. Your B12, folate and ferritin are all too low. Your FBC probably looks normal, because B12/folate deficiency cause enlarged red blood cells, and iron deficiency causes small ones. So they cancel each other out and put the MCV in the normal range. Do you have a number for MCV? With that level of B12 you could possibly have pernicious anaemia, you would certainly have symptoms I would imagine, list here:

pernicious-anaemia-society....

It needs to be determined properly if you have this condition before prescribing folic acid, because taking the folic acid will normalise your blood tests without treating the B12 deficiency, and the result could be neurological damage. Can you maybe say what B12 supplement (and at what strength) you have you been taking since the test?

Hampster

[sazzles6 in reply to Hidden]

what a useful link thank you. I have quite a number of them symptoms but just presumed they where linked to being hypo, although I get pins + needles every where including my tongue + cheeks. and on the bottom of my feet> very frustrating. i'v been taking sanatogen A-Z complete multivitamin. it contains 1pg (don't have the proper symbol on my keyboard!) of VitB12.

I had another set of bloods taken on the 3-may. before taking any medication!

MCV is 85.1 (82- 98)

[sazzles6 in reply to sazzles6]

do you also know what serum total protein means? 81g/L (60-80)

and serum albumin?? 53g/L (35-50)

xxx

[Hidden in reply to sazzles6]

I think that's the MCH? The MCV is usually between a range of 80 - 100. I'm pretty sure it will be normal because of your iron level. I think you seriously need to see your doctor again (don't take any sublingual B12 yet). The amount in the multi-vit is irrelevant. It's tiny, and if you have PA you won't be able to absorb B12 through your stomach anyway.

It is shameful that you have all those symptoms and your doctor has not made the link with your B12 level, it's only 13 off the bottom of the range. The serum B12 test just measures all the B12 in your blood, most of that is in an inactive form. It also tells you nothing about what's getting through to tissue level. You need to arm yourself with info.

You should visit these 2 websites:

b12d.org/

pernicious-anaemia-society....

This is a treatment protocol designed by the B12d.org team, show this to your doctor. You would be getting treatment under this protocol:

b12d.org/sites/default/file...

Another thing to consider is the Active B12 test, a link to getting this test is here:

thyroiduk.org.uk/tuk/testin...

And this explains the test if your doctor hasn't heard of it:

biolab.co.uk/docs/vitaminB1...

It is very common for people to go out and start taking sublinguals, it works for some people but not everyone. And it means PA continues to be misunderstood and under-diagnosed by GPs. Also, the sublinguals are not exactly cheap, and if you have PA treatment needs to be for life. I understand this is the only option for some people with unsympathetic doctors, but at the stage you are at I really think you should be pushing for a proper diagnosis. This is also extremely important if you are thinking about having another child.

H x

[sazzles6 in reply to Hidden]

haa, yes it was, I upated it a few mins ago, it was MCV 85.1 (82-98) I'm going t have to wait until my GP is back from her holidays unless I see a locum, but I feel unsure about that.

[Hidden in reply to sazzles6]

Maybe read up about it and see what you think?

[Hidden in reply to Hidden]

Meant to say there are 2 antibody tests that can be done:

anti-parietal cells

anti-intrinsic factor

[sazzles6 in reply to Hidden]

yes I think I will read up and go back with an arm full of questions. I originally went about the pains in my knees and wrists, that were so painful that I couldn't get up when I fell over one day and I struggled to get out of the bath, it was especially worse when we had the really bad bout of cold weather so I thought enough was enough and I needed to see the doctor. since being on levo them particular pains have eased and the tests for rheumatoid came back clear. but I still suffer from all the other symptoms. the fatigue + brain fog has leaped to 1st place now. plus then the worry about everything else. I see thyroid issues now everywhere and cant quite believe how common it is, yet no-body knows anything about.. xxxx

[Vivante]

I know exactly how you feel. I was diagnosed with hypothyroid in 2001-2. I had been feeling really ill for some months, it was suggested I had counselling, although I did not believe it would work, I tried it. (I trained to become a counsellor myself). I had a second opinion, from then on it was a time of hospital visits, blood tests, etc. I have been taken thyroxine since then, I have been taking warfarin since 2004, digoxin and other pills.

I feel like I am in a daze and the mornings are the worse. I now feel a lot of discomfort in my joints now, my muscles seem to be weaker. I did not know so many people suffered in the same way. We find out as much as we can about our medical condition and work with it. I always thought a person with hypothyroid noticed the cold more, I have never felt like that, I wish that was true now, it is hot, hot, hot.

I had to find out myself about my condition , and I continue to search for answers.

I hope you will feel a little more human soon, I feel like a zombie.

Take care of yourself.

[tegz in reply to Vivante]

Two blind spots apart from the TSH rubbish that passes for monitoring are the business of antibodies [or hopefully not] - and that of adrenals, which can be heavily involved in thyroid behaviour and energy levels.

These are standard tests so I fail to see why they're not commonplace in a strapped NHS. The ongoig cost of ill health is huge when these tests are neglected.

The third thing , when things don't improve under treatment [as hoped] is FT3 to RevT3 ratio and, though more expensive, would shed light for those blind [and misled] Drs struggling help humanity and give sufferers some hope in their competence to practice in this critical Thyroid arena.

Diabetes gets £1Bn in funding p.a.!!

[Vivante]

Many thanks for your reply, I am still learning, I must now look further in to the T. ranges.

Thank you once again.

[tegz in reply to Vivante]

Many reports here about T4 not staying the course after 10 or more years of treatment.

Also, 'cross over' symptoms between Hypo and Hyper are reported.

This whole arena is so neglected, research wise, that we are sadly left to figure out our own in depth diagnosis and search for effective treatments in too many cases.

Many try to educate their GPs [I try] but blank looks and defensive reactions are common.

Easier to say 'Depression' - to intelligent and aware patients, than admit failure or lack of professional courage.

It must surely change, though.

[Vivante]

I am blabbing onIWhen I was first diagnosed with Hypothyroidism, I was not given any info by my GP. It was just take the medication Thyroxine 100 micrograms a day. I was not told when to take them or how to take them. I had a blood test some weeks ago and the clinical info states "very slightly raised TSH at 5.39 in April 2013." I must now have another blood test in October.

These are the sorts of comments that were made to me over the years, "to keep your thyroid healthy take Kelp, " I ignored that comment. I was told to work on the shoulderstand and plow position, it's good for the thyroid. I was told not to eat broccoli, or Brussels sprouts it can damage the thyroid gland. I became increasingly concerned at what was being said. I ignored what I was told, although I did work on the shoulderstand and plough and taught many of my class members to do so. After a lot more research I realised I was making my condition worse. I became afraid to eat anything, but I carried on with my usual diet, thank goodness.

What concerns me most now is how can we encourage others to ignore comments such as that. I have been providing my GP with papers re osteoporosis and the importance of a healthy diet, including the broccoli.

If you are interested look on the website irish osteoporosis society Risk factors, I found that some months ago while searching for info on osteoporosis. None of this info is provided by the medical profession, it seems you have have to break a hip before you are screened, I haven't, fortunately. I feel so frustrated and I must admit I feel some anger at the GP. Earlier this year I had the annual check up re-med's, I saw another GP and stated I felt tired and close to tears, (not unusual with the Thyrod) again she wanted me to talk to someone and gave me a presc ription for anti-depressants. I tore that prescription up. I am blabbing on, again. Must be the weather. We can always blame the weather for all our aches and pains. I am grateful to you for taking the time to reply. You keep as well as possible.

[sazzles6 in reply to Vivante]

Thank you for all your replies, its interesting reading about how other people deal with this illness.

Goodness me Vivante sounds like you've had a tough time over the years. I've been suffering with very sore wrists these last few days. We (myself, husband + kiddies) spent a lovely long weekend in the isle of Wight, the weather was glorious and I felt abit more human right up until we headed home, travelling up the M6 we hit extremely bad weather, the temperature dipped and everything started. I read some were that eating sea weed was meant to help. ewwwwwww!!!!!! I've had symptoms since I was a little girl, my mum took me to see several doctors each said my pains where just growing pains then at 21 I went back to my doctor and said these cant be growing pains any more I haven't grown!! wouldn't mind but I'm only 5ft 3. lol. He said it was general arthritis and it may come + go but nothing to worry about so I didn't until I fell! it was so embarrassing in the middle of a busy children's centre with my kiddies. I think a lot of the symptoms can be mis-judged for something else and some g.ps would rather administer a 'short' course of drugs instead of a life long treatment plan. I have only seen my doctor once + that was when she diagnosed me, I was a bit shocked as I was under the impression I was being tested for rheumatoid arthritis not thyroid, I thought she has read a mistake or something with them both ending in 'oid'!

I really don't blame you for tearing up the prescription, have you had a look at the video at the top of this thread, its all about b12, what is you recent b12 results? its very interesting and says about people being given anti-depressants instead of b12.

I also have noticed a pattern of when I feel particularly more tired than usual, morning are a huge strain but then most people find that, but I feel extremely bad in the afternoon between 1-3pm, no matter what I'm doing I always find I'm not as chatty (usually I don't shut up!) and lose concentration easily. does any one else find that? TH

P.s, still coming to terms with having to take medications for ever!