editfmrt11 years ago

Your vitamin B12 and Folate (another B vitamin) is far too low although it is in range. There are many side effects of low b12 and fatigue is often top of the list. If you have not already researched B12 deficiency I would highly recommend looking at the Pernicious Aneamia Society web site and they have a healthunlocked community too.

Please remember that most medics have very little knowledge and will quite wrongly say your levels are fine. They are not. Also the serum B12 test is not accurate and the new Active B12 test is more reliable. The PAS also have a submission to the Scottish parliament to campaign against poor diagnosis and treatment.

You have a couple of choices - you can self supplement with a good B12 (Jarrow 1000 or 5000 sublingual methylcobalamin) and folic acid or you can try to find the cause and get a formal disgnosis beforehand. Once you start supplementing and your levels go up then no one will take it seriously. Do not take folic acid without b12 because that can mask a B12 deficiency but the damage continues in the background.

An excellent book called "could it be B12' will tell you all.

shawsAdministrator11 years ago

email louise.warvill@thyroiduk.org and ask for a copy of the Pulse article by Dr Toft ex of the British Thyroid Association and highlight the question 6 wherein it says:-

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

JanW11 years ago

Wow and she said my B12 was fine! I'm going to follow your advice and see if I get an improvement - any would be good, thanks for the help Jan.

Marz11 years ago

....serum ferritin also over the top of the range which MAY just indicate some inflammation somewhere. In the case of my husband it must have been his thyroid as once he started treatment with T4 the Ferritin went down to mid-range. Ferritin is stored iron. Your TSH may also indicate you need more T4 as Shaws suggests. B12 needs to be nearer the top of the range. It works at a cellular level just like the only active thyroid hormone T3 - and aids in the uptake. You may have poor/slow absorption of nutrients - often the case with auto-immune......

JanW11 years ago

shaws: I will email louise for a copy of the Dr Toft article. Last year my TSH went up to 17.1 so the docotr put me on a slightly higher dose of thyroxine 100 micrograms I have a bit more energy before I couldn't even walk up the garden. I don't understand what free thyroxine is so will google it I wish I knew as much as you do it's made me realise I'm not only going to email for Dr. Toft's article but will buy more books on thyroid problems. Thanks for your help. Jan.

Marz: My serum ferritin has been over the top for years but as you and shaws think I need more T4 I will go back and have a word with my doctor, and the problem is they don't seem to understand much about thyroid problems and none at all about auto immune. Thanks for your help it is nice to get some gives me more of an insight of things - wish we had a doctor in the family who gived a hoot Jan.

Jackie11 years ago

Hi If on just T4 ( Levo) Make sure you have had a Free T3 test, this may be a bit low in range, in which case you would benefit from some T3 in addition to your meds. split the dose into half, am and 12 hours later.Good to start on a lower dose very gradually, to avoid side effects, quite potent.It helps weight and other sympotms , may slightly lower your tSH too.

U`s and E`s, GFR brilliant, the most important one. Sodium is a bit high in range, sodium higher that desirable. Make sure you do not have much salt, some vital but too much effects fluid retention and may cause high BP. Potassium ideally should be about 4, any range, Are you drinking enough ? Water in particular is best. It may be that as that would make a little difference, any way very good for you.LFT`s good FBC good but I agree about B12, also autoimmune. Should always be tested for vit D, really a hormone ,not a vit, if low or low in range, then a corrected calcium test and Vit D ,,script hopefully? Then re tests 3 months for both, if OK annually.Other test you need is diabetes, blood, autoimmune and hormonal, With one autoimmune disease then others often follow, gradually. There are many, I have lots.

Best wishes,

Jackie

JanW11 years ago

Thanks Jackie I'm now realising that although they should have done my yearly tests particularly for thyroid they only did TSH I've never had a free T3 done and when I mention autoimmune tests they just say well that won't changes I.e. I'm autoimmune and that's that. I was interested in your point that if you have one autoimmune disease others can follow so will ask if I can get tested for others. I did ask if they could test adrenals and pituitary but was told with my results they were ok. I do drink a lot of tea and juices but not juices, will have to drink more water. I do have high blood pressure but meds made my legs and ankles swell and fatigue even worse I came off them. Glad you thought the U's and E's GFR was brilliant we all worry about our health when we don't feel we'll I have little faith in doctors and have never found one who's interested enough to help.

I'm so glad I came on this site it's helped me a lot some lovely people. I am making notes on all the advice I've got and will go back to ask her to do the tests that have been suggested. Thanks again Jackie.