How should I feel about my latest appointment?

[chihiro]

I saw a new doctor today. I explained to him what happened with my previous doctor who kept insisting that I was only depressed and needed antidepressants. I told him what my symptoms are (extreme fatigue, cold hands and feet,constant pins and needles, tinnitus, hair loss, drier skin, unable to lose weight etc) He seemed to be listening and asked me questions about my symptoms.

He said my thyroid levels are fine. Latest tsh 3.4(0.35-5.5) which went up from 1.4 and ft4 13.3(10-19.8) which went down from 16.4. I queried my TPO ab going from 92 to 247 in three months (range 0-100) and he said that various things could cause them to go higher amongst them stress.

He said that my b12 is looking good and doesn't understand why I was put on b12 injections. Originally it was 362 (211-911). He told me he is vegetarian and his levels are 92 and he is fine. So no more injections for me.

He said I'm not anemic as my FBC looks fine but my iron and vitamin d need supplementing. Told me to carry on taking the supplements that I have. I'm increasing my floradix as my ferritin is almost 0. He has ordered some higher strength vitamin d (5000 I think he said) for me to take for 3 months.

He wants me then to come back and have repeat bloods. He will also test intrinsic factor to see if I have pernicious anemia. He didn't dismiss the idea of there being a thyroid problem starting up for me so he wants to repeat all the thyroid tests too. He told me to work on my stress levels.

So ummm I'm trying to digest this and trying to figure out if it was positve or not. I am going to be taking iron (floradix as I suffer with constipation), folic acid, vitamin d and I'm considering buying b12 lozanges.

Oh and one other thing he said about taking thyroid medication is that he doesn't want to jump straight to that because it is complicated and if it's not needed it causes problems to the heart and bowels.

[Moggie]

I would say that you have had a good result. He is going to test everything he possible can first and then, if nothing shows up, look at the thyroid again. He is also going to keep a close eye on your thyroid levels with repeat tests so I would diffinately be sticking with this doctor and see it through.

Cant understand him saying your are not aneamic but keep taking the iron tablets because your ferritin level is almost nil????? seems a really strange thing to say, but its great that he is upping your vitd supplements and doing the pernicious anemia test.

But wht I think is the most important thing is that he actually listned to what you had to say and acted on it - a rare thing these days with a doctor.

Moggie x

[chihiro in reply to Moggie]

I agree. He listened and asked questions which I didn't get with my previous doctor. The anemic thing is that he said that my results in the fbc don't indicate anemia but I might end up going that way if I don't get my very low ferritin levels up. It's the b12 thing that is mainly making feel unsure. But yes, the rest is positive.

[Moggie in reply to chihiro]

I also think Hampster had some good points and I did think of you asking him to do a cortisol test for adrenal function as well as Hampsters suggestion of a coeliac test as you really do need answers as to why so many of your vitamins are low as this would indicate gut issues like coeliac.

Moggie x

[chihiro in reply to Moggie]

Ah cortisol, yes. I had asked the first doctor to test that but was told it was too expensive and she couldn't see why we needed to test it at that point. I'll make sure I ask him when I next see him. Thanks Moggie.

[Hidden]

I guess its good you've got the vit D and iron supplements, and actually unsurprising that he won't continue the B12 injections. But good that he's testing IF antibodies.

I find his personal comments astonishing - boy I'd like to question him further to see if he's really symptomless at a level of 92! Very very dangerous to be basing how his patients feel in comparison to his own test results, we are all different. Particularly when the test is so unreliable, and particularly when you've had loading doses so your result is skewed by that.

Chihiro if I were you, if your IF test comes back negative, I would supplement anyway with sublingual B12 and a good B-complex with at least 800mcg folic acid, maybe more initially to get your levels up a bit (up to 5mg per day is used for 4 months to correct a deficiency).

Did you ask about Coeliac testing etc. i.e. why he thought you were so low in vits and mins?

Maybe someone else can chip in about the thyroid antibodies, I think he's being very throw away about those as well. But at least he's going to retest you, which is perhaps the best thing to hang on and see what the thyroid is doing once your deficiencies are corrected. Although the stress comment, gawd, it's always our fault, isn't it?

[chihiro in reply to Hidden]

I thought of you when he said that he couldn't understand why I had b12 injections and that my level of 362 was good.

Coeliac testing was done in the autumn and had come back negative. He says there is definitely something going on here and that we need to look into it. He told me to see him sooner than 3 months if I feel worse. I was honest with him and told him that things in my life have been stressful lately (with the robbery) and that I haven't been as good as I should have about taking my supplements. So I think he has taken that into account and wants me to give it a serious good go with the supplements, take them religiously and then retest to see how I'm doing.

Should I take the b12 now or should I wait for the test in 3 months time?

The other thing he said he wants to test is my calcium levels...I didn't follow but it was to do with vitamin d supplements.

And the stress thing...yes, I really don't know what to make of that. Why would stress increase my antibodies?

[Marz in reply to chihiro]

You might like to remind him that only about 20% of the B12 in his blood will make it to a cellular level where it is needed. Have you seen the video that hampster1 posted about Professor Smith and his research into Low B12 and a shrinking brain ? - it's on YouTube. Am assuming he is young and indestructible - wait until he turns 50 - or even before !! Think you have done well - keep up the good work

[chihiro in reply to Marz]

Hi Marz

yes I have watched that video. I must say his comments on b12 left speechless. I couldn't believe what I was hearing and felt that there was no point arguing as he obviously very strongly believes that 92 is fine as long as he takes supplements when he starts feeling a bit run down. My husband just reminded me of something else he said..he has never seen anyone with levels over 400-500 unless they have been having injections!

Thanks for the encouragement. I'll keep at it

[Hidden in reply to chihiro]

Ah yes, I forgot about the robbery, sorry, short term memory shot to pieces by autoimmune disease!

Yes, he's sounding good now. Calcium important to rule out parathyroid issue (low vit D + high calcium = possible hyperparathyroidism).

When's he doing the IF test? Don't take any B12 until you've had that test done.

I'm not sure about the stress and antibodies connection? Maybe Moggie might know?

[Hidden in reply to Hidden]

Oh, and squeeze his arm to see if he'll do parietal cell antibodies as well.

[chihiro in reply to Hidden]

IF test will be done in 3 months time with all the other tests. Is the IF test the one that can give you false negatives? What's the difference with the parietal cell ab test?

[Hidden in reply to chihiro]

IFAbs are highly specific (i.e. diagnostic of PA) but are only positive in 50% of sufferers. PCAbs are considered less specific, but are positive in 80 to 90% PA sufferers. Basically if you have PCAbs you will eventually end up with PA, because parietal cells in the stomach are responsible for making gastric acid and intrinsic factor. The destruction of your parietal cells via antibodies means you can't produce intrinsic factor, ergo you can't pick up and transport B12.

[Hidden in reply to Hidden]

This is a good study to show your doc:

ncbi.nlm.nih.gov/pubmed/147...

"This investigation shows that at the debut half of PA patients (55%) do not have anaemia, some have normal Cbl-absorption and some have malabsorption. 95% have PCA and 59% have IFAb. So, IFAb-negative PA is often seen (41%) and seroconversion can take place. Diagnosis is even more reliable, when achlorhydria is present in PCA-positive persons. Healthy PCA-positive persons are probably predisposed to develop PA. Patients with cbl-deficiency, IFAb and/or PCA must be considered as having latent PA even if they have normal haemoglobin and normal Cbl-absorption. These patients should be followed and, in case of anaemia or signs of neuropathia, treated."

[chihiro in reply to Hidden]

Thank you Hampster. I'll print that out and take it with me when I go to see him about my results in the spring.

[Stourie in reply to chihiro]

Maybe better to post it about a week before so he has time to read it before your appointment.

Jo xx

[Fruitandnutcase in reply to Hidden]

I'm reading a book at the moment about Graves. It is written by by a US endocrinologist who blames it all on 1) worrying 2) lack of vitamin D and 3) carbohydrates.

His name is Sarfraz Zaidi and the book is called Graves Disease and Hyperthyroidism ( What you must know before they zap your thyroid with radioactive iodine)

Interesting book which ties in stress and autoimmune antibodies, it made sense to me because I was a champion worrier, loved my carbs and although I haven't had my Vit D measured I wouldn't be surprised if they were on the low side.

Chihiro's doctor sounds good but just think how much better he would feel if he got his B12 up from 92!

[chihiro in reply to Fruitandnutcase]

Lol I know, I still can't believe his b12 level and he says he feels fine!

That's interesting about the stress and antibodies link. As my numbers are out of range but not that high it might make sense. It has been a very stressful time for me lately so that might have affected the results.

I'm learning that this is a long journey...when I went to the doctor in the summer I thought I'd go in, have some tests, and find out what was wrong with me (naive I know!!!).. I think that I am feeling positive about this doctor, despite the b12 ignorance. Hopefully it won't take much longer to figure out what is causing all my symptoms.

[Fruitandnutcase in reply to chihiro]

I was naive about it all too. It is amazing how it looks so simple to us yet it turns out not to be. My B12 was 327 (211 - 911) and the endo was happy with that but my mother behaved like she had Graves - all the symptoms were there but weren't recognised, she just came over as very difficult to live with/ quirky/ volatile etc etc, she did have pernicious anaemia and was on B12 injections so I supplemented with Jarrow's and last time it was tested it was much higher - haven't got the number in writing but it was much higher so I confessed that I'd been supplementing and why.

Nice to have a doc who takes you seriously ( mine is lovely) sounds like you are getting there doesn't it, shame you can't tell him your support group are all very worried about his extremely low B12

[Hidden in reply to Fruitandnutcase]

Yes vitamin D is getting some interest re Graves, you can actually find studies on pubmed showing much reduced vit D levels in Graves patients. Mine was insufficient rather than deficient (about 56nmol/L) but of course my Endo said that's normal, despite also saying that vit D was often the magic ingredient! And in fact, even knowing it was the magic ingredient, I still had to ask him for the test almost a year into treatment. It's probably no surprise to anyone that my own magic ingredient was B12 and folate, I wish that would get the recognition it deserves.

[Fruitandnutcase in reply to Hidden]

One endo I asked to test my vitamin D refused saying ' oh everyone is on about Vitamin D at the moment, its just in fashion, I'm prepared to test if someone can prove its value to me'. I mean, what can you say to that? I should have said 'fashionable my foot - just test it and see' but I probably sat there with my mouth open in shock.

Unfortunately it was about a week before someone posted a really good video by an American doctor who believed in it so much he had his entire family taking it, so I had no real evidence to fight back with.

I supplemented that too but I must stop for a while and send off to the hospital in Birmingham ( there is a link on the TUK site) who do a home testing kit for what looks like a reasonable fee.

[Hidden in reply to Fruitandnutcase]

Thank the lord I'm private, so he just rolls his eyes and does whatever tests I ask for! Here's the study:

ncbi.nlm.nih.gov/pmc/articl...

[Fruitandnutcase in reply to Hidden]

What a man. Great doctor! I wish NHS doctors would give you the option of paying for tests rather than just saying no. I know I mix private and NHS at the dentist so I don't see why doctors couldn't do it as well.

Interesting looking study must print it off for future use.

I see it is a Japanese study. I wonder if they take the thyroid more seriously since the tsunami and the radiation risk or even just because of radiation after effects since WW2?

[twintastic in reply to chihiro]

Hi,

Your doctor mentioned calcium due to your low Vitamin D level. Correct vit D levels are needed for your body to absorb calcium correctly.

I have very low vit D levels which may be contributing to awful bone pain. Low vit D can cause rickets. I take liquid vit D3, magnesium, B12 (sprayed under the tongue) and calcium. I do not take in tablet form as my stomach does not absorb nutrients correctly.

My B12 levels are up and down like a yoyo. I have just had six loading injections and will then have one every three months. Did you mention to your GP that you can have high B12 levels but your 'active' B12 is the important figure. I believe St Thomas's Hospital in London test for 'active' B12, but you would need a referral from your doctor.

I think your new doctor is being very thorough.

All the best,

Mel x

[Muffy]

If your TSH made such a big jump then you need treatment. Personal TSH levels vary very little untless the thyroid is struggling.

[chihiro in reply to Muffy]

Hi Muffy I was told today that my tsh and ft4 were in range so no treatment needed at this stage. He didn't dismiss the idea of thyroid being the cause of my symptoms but he doesn't think I need treatment now. He also kept telling me (about all my blood tests) that you test them one day and you get a number and if you tested them a week later you would get a completely different number (much higher or lower). So in your opinion TFT that change as much as mine have are indicative or thyroid problems?

[Jow11 in reply to chihiro]

I understand TSH going up and down can be indicative of Hashimoto's, especially as your TPO antibodies have gone up considerably.

[chihiro in reply to Jow11]

That is what I have been suspecting but the doctor didn't seem convinced. He said it is one of the possibilities but as my antibodies are only moderately high (in the hundreds instead of the thousands) it could be caused by other things amongst them stress. It has been a very stressful time for me so maybe he's right. I am going to work on destressing and hopefully "life" won't get in the way and mess up my plan!

[Muffy in reply to chihiro]

There is a paper that says about the small movement in individual TSH levels. Do you have your blood tests taken at the same time of day? 8 - 8.30am would be the best time for you.

"VARIATIONS IN THYROID function are seen between

individuals also within the normal range, documented

by relatively small individual variation in serum

levels of thyroid hormones and TSH between measurements

in the same individual compared with variations between

individuals ". Small Differences in Thyroid Function May Be

Important for Body Mass Index and the Occurrence of

Obesity in the Population

The Journal of Clinical Endocrinology & Metabolism 90(7):4019–4024

Printed in U.S.A. Copyright © 2005 by The Endocrine Society

doi: 10.1210/jc.2004-2225

Treatment for primary hypothyroidism: current approaches and future possibilities

Ali J Chakera,1 Simon HS Pearce,2 and Bijay Vaidya1

Firstly, because the TSH in the general population is not normally distributed, and more than 95% of healthy individuals have TSH less than 2.5 mIU/L, it has been suggested that the upper limit of the TSH reference range may be skewed by occult thyroid dysfunction,15 leading to a debate whether the upper limit of the TSH reference range should be lowered from 4.5 to 2.5 mIU/L

Eur J Endocrinol. 2006 May;154(5):633-7.

Maybe others could suggest other references for chihiro to take to the GP.

[Stourie in reply to chihiro]

It's also very important to get your bloods done first thing in the morning as that is when tsh is at its highest. It goes down as the day goes on.

Jo xx

[chihiro in reply to Stourie]

Muffy and Joanna

I have read about the importance of time of day for tsh. My first tests were just after 10 am and the latest ones were at 9ish. I'll try to make my next appointment in advance so that I can pick an earlier slot. The other thing is that first test I had fasted (as I was unsure so did just in case)and second one I didn't.