TSH and B12 results through - what next

[Clarity1971]

See my previous posts re symptoms - I have just about every symptom you can think of associated with an under active thyroid and/or B12 deficiency.

Have been back and forth to GP and various blood tests etc.

A few weeks ago my TSH level was 3.0 (0.35 to 6.9) and now recent test (taken a few hours later in the day) is 2.3

Labs refusing to do T4 or T3 or to look at antibodies as TSH within range.

My ferratin level is 10

B12 is 215 (189 - 915) so although within range it is at the lower end

Folate is 12.5 (4.0 to 20.0) so this seems ok?

GP has referred me to see a neurologist - not sure why. I did mention that I am having some problems with coordination so I wonder if he is suspecting MS but this could be down to low B12 right?

I'm going to also push for an Endo referral as my glucose is high (it has been a bit up and down over past year and recent fasting result was 6.3)

My cholesterol is high too at 7.3 and although I don't think this is causing me any symptoms, it obviously need tackling.

I'm not sure what my question is really. I'll let the neurologist do his/her 'thing' but am I right to still push for Endo referral?

Is my B12 too low? f so, whats the fastest way to get it back up again?

Anything else still missing here? Things I need to push for? I just want my life back - its so depressing - I am practically housebound and its been this way for almost 2 months.

Lastly, if I have no joy getting tested for Hashimoto's and need to pay for the test privately - can anyone give me a ball park figure on how much this will cost. I have had a look at some of the links on here to the private labs but I find it all a bit confusing my brain refuses to process much at the moment).

For T4 and T3 and antibodies - are we looking at a couple of hundred pounds or more. When I looked, I managed to calculate it at around £700 and I just can't afford that but as I said, I'm finding it hard to focus at the moment

Thank you x

[HarryE]

You can get T3. T4 & antibodies done for around £100. If you go to the main TUK website section on private testing there are some discounts available. Personally I would say your high cholesterol is a hypo symptom, your ferritin & B12 need some serious work. Ferritin should be over 70 & B12 8-900 I think. If you can get those up you may feel a bit better. B12 needs to be methylcobalamin as it absorbs better, you can take as much as you like really as it gets peed out if not absorbed so you can't overdose. Iron absorbs best with some vitamin C. To be honest, I'm not convinced you need a neurologist, but I'm not a doctor.

[HarryE]

I had very bad co-ordination problems and my TSH was 'only' 3.3 when I was really poorly, and never got above 4. They have all gone on proper treatment - which I have had to do myself I might add!!

[Clarity1971]

Thanks Harry, I'm not convinced that I need to see a neuro either but it can't hurt I suppose. I just don't want it to delay an endo referral. I hadn't realised that raised cholesterol was a hypo symptom - thanks.

The cost isn't too prohibitive then - I think I'll just bite the bullet and get on with it and get the tests done privately. Thanks for your help.

[Marz in reply to Clarity1971]

Years ago before the thyroid test was around - anyone with raised cholesterol was treated with thyroid hormones.

b12deficiency.info/signs-an...

The above link will demonstrate just how many symptoms can be neurological with LOW B12.

Your T4 will not convert into the ACTIVE T3 if Iron and B12 are low. In fact you need good levels of Iron - Ferritin - Folate - B12 - VitD - to begin to feel well. Please read the link I have posted as you will learn a great deal and will know how to approach the GP. Your range is SO low as only about 20% of the B12 result can be used at a cellular level where it is needed.

Do you have any gut issues ? That will also affect absorption of nutrients.....

[Clarity1971]

Thanks Marz - will take a look at that link. I was diagnosed with IBS years ago but thanks to this forum have realised that this could be a lazy man's diagnosis of Coeliacs.

Will push for that test too I think

[shaws]

This is another link and look at Hampster1's comments as she is very knowledgeable re B12 deficiency.

healthunlocked.com/thyroidu...

As Marz's pointed out a higher cholesterol is a clinical symptom but nowadays doctors are unaware and will prescribe statins instead of thyroid gland medication.

[suzannai]

I doubt that you need a neurologist appointment with a B12 level in that range. Often times doctors have a total inability to think outside the box and put the pieces of the puzzle together. Your ferretin and your B12 levels are very low. I would suspect based on this that Vit D is also low. All are needed for proper hormonal action but the B12 and iron and even the D can cause separate symptoms. I would additionally do a saliva cortisol test to check the adrenals as severe adrenal issues can impede thyroid function but can also cause issues with coordination, balance, etc. It is also important to figure out if the coordination is due to a neurological issue but often times the poor coordination can be due to poor muscle tone/weakness due to low iron, D, or low thyroid. I think before anything else you should get these levels optimized and see how you feel. For B12 I would recommend 5000 mcg Methylcobalamin as a sublingual to make sure that you are absorbing it. It dissolves under the tongue do doesnt have to be digested.

[susymac]

The society for haematology have issued new guidelines for the diagnosing of PA/vit B12 deficiency as of May this year. Its definitely worth a look. They now acknowledge that the serum B12 test is unreliable at that if someone whos Test result is under 300 AND who is symptomatic should now get further testing for IF antibodies and MMA and that clinical symptoms are now considered a big part of diagnosis.

Even if the GP still wont treat, you have grounds to be referred to a haemotologist.

I only just found this out, my levels have always been the low end of normal, I have informed the GP surgery of these new guidelines, (while the person who is in charge of indevidual funding requests was in the surgery! lol) so waiting to see if they are going to do anything. Wont hold by breath but I'm staying possitive. I'll see if I can find the link to the new guidelines and post it

[Clarity1971]

Thank you so much This is all so helpful - I have never had to 'take charge' of my own health before. I have always trusted the doctors and gone with their word but I don't feel I can do that anymore so the more I can arm myself with information, the better.

Sorry to sound so dumb but I'm not sure of some of the abbreviations:

PA = Pernicious Anaemia?

What are IF antibodies and MMA?

[Clarity1971]

Right - have googled and now know that IF is Intrinsic Factor but so farr all I can for MMA is 'Mixed Martial Arts'

So still non the wiser!

[whitenoise]

Hi Clarity, not sure if you have found this out already, but MMA stands for Methylmalonic Acid. I had to have mine done at the local hospital as this was something the practice couldn't do. You may have difficulty however since I found out afterward that it was the first time the GP had asked for the test, as it is not normally prescribed through general practice.

As well as the link Marz sent you, you might want to take a look at them b12d.org website as well. A whole load of information on there, so work your way through the links on the left. The second link (b12d.org/b12-deficiency-protocol-treatment) is especially important/helpful.

Hope this helps!