Help needed with how I am feeling.

[sophiethecat2003]

Hi guys,

Since l last posted I have been to see Dr HM privately, he is a brilliant and caring doctor.

I have a shopping list from him for my doctor to sort out.

I was concerned that my ferritin was high and my B12 low. My doctor didn't see a problem.

Dr M said I should have a fasting transferrin saturation test, which I am waiting for the results of and if this is above 45% then I will need a private hemochromatosis genetic screen.

He prescribed 500 mg of B12 per day and B complex which I have bought from Holland and Barrett.

Cholecalciferol 20,000 IU twice per week for 10 weeks, as my vitamin D was low. Then 1 per week checking the Vit d level every 3 months to make sure that it is between 75 and 150.

He thinks I have sleep apnea, and I am being referred to a sleep clinic. This is due to symptoms I am experiencing.

Some of my symptoms also suggest silent laryngeal reflux. I have Lansoprazole one a night.

I have reduced my Liothyronine to 10 mcg per day instead of 20mg for the next 2 months,if when tested the TSH is not 0.3 or above I will need to reduce the Liothyronine by 10 mcg every week until the TSH is between 0.3 and 2. This is to avoid triggering Atrial Fibrillation.

Why have I never been told or tested for the above after numerous visits to my doctor.

I am feeling very tired and unwell at the moment, my tummy is really bad, l am just hoping that this is just things settling down with the meds.

As you can see the above is quite a lot to take in, any help with any of it would be great. Especially how I am feeling. I am sleeping but feel exhausted.

its really strange as I feel very tired I in my head and face as well as my body.

Thanks guy's.

Big hugs Sophie ☺ xx

[Treepie]

Is your B12 methyl cobalamin which is more easily absorbed than the alternatives?

[sophiethecat2003 in reply to Treepie]

Hi Tree pie

Thanks for your reply.

The label says Cyanocobalamin. I read somewhere that B12 spray is better but have no idea where to get it.

Thanks

Big hugs Sophie ☺ x

[Treepie in reply to sophiethecat2003]

My wife uses Pure Advantage spray from Amazon and from the same place I use Jarrows tablets which come in various strengths. The form of B12 you have is most commonly found in multi vitamins and is allegedly cheaper .When I questioned the supplier of a multivitamin he said there was no biochemical difference but the consensus on here is that the methyl form is best.

[Clutter]

Sophiethecat, I have edited your post to remove Dr.M's name in accordance with posting guideline #25.

25. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.

You are possibly feeling tired because of the reduction in your T3 dose. Did Dr.M test FT4 or FT3 in addition to TSH? The Rotterdam Study below finds no association between TSH and atrial fibrillation. You will have to subscribe to access the full text.

press.endocrine.org/doi/abs...

[sophiethecat2003 in reply to Clutter]

Hi Clutter,

I am really sorry I didn't realise that I shouldn't post names.

I have had a full set of tests including FT4 and FT3.

He said to cut the T3 down to 10mcg to try and wake up the TSH.

Big hugs Sophie ☺ xx

[greygoose in reply to sophiethecat2003]

Do you have a copy of the results of this test? If so, can you post them here, then we can get a better idea of what is going on.

I'm sorry to say, I Don't think much of this doctor's approach. Just like any bog-standard GP, he is dosing by TSH results. And that it wrong. It should be according to FT3 plus symptoms. A low TSH does not, in itself, cause AF, nor anything else. All it does is stimulate the thyroid gland, and you Don't need that because you are taking T3. T3 will always lower the TSH. He should know that.

Treepie is right, it should be methylcobalamin, you won't absorb the cyano.

You more than likely have sleep apnea because your T3 is low. A sleep clinic isn't going to help that.

He should not be prescribing Lansoprazole on just the suspicion of reflux, he should find out what is really causing the problem. You probably have low stomach acid, as you are hypo, and Lansoprazole will make that worse so that you will not be able to absorb the suppléments, nor the T3, you are taking. The symptoms of low stomach acid and high stomach acid are the same. A doctor should know that and test to find which it is.

I really think you should do some serious research, and then have a serious talk with this doctor about his approach. It's my opinion that he is just going to make you sicker. But, hey, I'm not a doctor.

Take care.

[sophiethecat2003 in reply to greygoose]

Hi again greygoose,

Thanks for your reply.

I took my blood tests with me when I went to see him, they were from September.

They are as follows:

Serum free T4 level ( XaERr ) 15.8 pmol / L ( 10.0 - 19.8 )

Serum TSH level ( XaELV ) 0.1 mu / L ( 0.3 - 5.5 )

Serum free Triiodothyronine level ( XaERq ) 5.5 pmol / L ( 3.5 - 6.7 )

Serum Ferritin level (XE24r) 193ug / L ( 12.0 - 300.0 )

Serum Vitamin B12 level (XE2pf) 288 ng / L ( 190.0 - 800.0 ).

The reason for going to see him was because of the high Ferritin and low B12.

He looked through all my blood tests including a full blood count.

It was my description of my symptoms that made him look further.

Thanks for your help greygoose. The reason I went to see him was I was going round in circle's trying to sort myself out. My doctor just wasn't listening to me. So I thought the best thing was to seek help from an endo. I have tried to research myself but I am struggling and going round in circles. I don't know what to do next. In an attempt to get better I have probably confused the issue.

Thanks again

Hugs

Sophie ☺ x

[greygoose in reply to sophiethecat2003]

Sophie, if you Don't feel well with a TSH of 0.1, you certainly aren't going to feel well with a TSH of 0.3. I think you need an increase, rather than a decrease. Your FT3 is only just over mid-range. Most people need it up near the top of the range. I really Don't think this doctor is going to do you any good, and he may do you more harm than your GP.

I Don't understand about your ferritin. If it is 193, and the top of the range is 300, why do you think it's so high? Have you been supplementing? But I do agree your B12 is very low, but cyanocobalamin just isn't going to raise it. He sounds like a bit of a charlatan to me.

If I were you, I would put my T3 back up to 20 - slowly - and get my B12 and D3 sorted. Then, possibly add in some other things, like magnesium and zinc - but one thing at a time. But, that's just me.

[QUE6T-33 in reply to greygoose]

Yep, I agree with other members. Your Ferritin

isn't high in range (if in doubt, could always

do full Iron panel to get full picture. B12 is on

low side - did you do an ACTIVE B12 test ?

As for thyroid - your FT4 & FT3 do not suggest

to me that you need to reduce your dose ?

(Im not a Dr)

[sophiethecat2003 in reply to QUE6T-33]

Thanks so much for your reply

Sophie ☺ xx

[sophiethecat2003 in reply to greygoose]

Hi greygoose,

Thanks for your reply, sorry for not getting back to you. I have been feeling very unwell.

If I could post a reply to you tomorrow that would be great. I have a couple of other issues since my last post.

Thanks so much for your help.

Sophie ☺ x

[greygoose in reply to sophiethecat2003]

Yes, of course, Sophie, take your time. Sorry to hear you're feeling bad. x

[Clutter in reply to sophiethecat2003]

Sophie, TSH is 'woken up' when FT4 &/or FT3 are low, and when they're low is when we have hypo symptoms. I agree with Greygoose, dosing according to TSH isn't likely to make you well.

_________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[sophiethecat2003 in reply to Clutter]

Thanks for your help Clutter.

Sophie ☺ xx

[Teuchter]

Holland and Barrett also sell the methylcobalamin spray, brand name is "Better You", its about £11 I think. I'm using it at the moment: I don't feel any better, but its early days yet. Next I'm going to try Jarrows lozenges, which seem to be popular with members.

All the best

Geoff.

[sophiethecat2003 in reply to Teuchter]

Hi Teacher

Sorry for late reply.

Will look at what you have suggested

Thanks so much

Sophie ☺ x

[Jacquid]

Sophiethecat, Holland & Barrett also do a sublingual lotion in a dropper bottle about £8.00 I'm off to buy some tomorrow, been taking it for over a year now.....it's important that you hold it under your tongue for absorption, stomach acids can destroy B12. Yours is low and it can make you feel unbelievably unwell, but it takes time to build it up. Good luck x

[sophiethecat2003 in reply to Jacquid]

Hi jacqiud

Sorry for late reply, I will look into what you suggest.

Thanks so much.

Sophie ☺ xx