Help with approach to GP needed

[louhop]

I was diagnosed with Hashi's about a year ago. I have had relatively good experiences with the GPs I have seen. The first one picked up on my sub-clinical hypothyroidism from a routine test and put me on levo when I had a FT4 of 4.7.

I went recently to the surgery to ask for tests to check I was on the right level having had some problems that appeared to be due to a change of brand (that Teva again!). This GP was quite 'clued up', they were aware TSH should by less than 1 for Hashi's, were willing to request a FT3 test and told me I should be taking Vit D prior to any blood test. The GP was very thorough and requested all the additional tests such ferritin etc.

However, admin staff from the surgery phoned yesterday and told me the GP wants me to drop my levo from 75 and 100 on alternate days to 75 each day. I have checked my results and they are:

TSH 0.07miu/L 0.2 - 4.0

FT4 19.5pmol/L 10 - 20

T3 1.5nmol/L 0.9 - 2.5

Ferritin 70ug/L 10 - 322

Folate 11ug/L 5.4 - 24

Vit B12 325ng/L 211 - 911

Vit D 67nmol/L 75 - 250

Calcium 2.2mmol/L 2.2 - 2.6

Phosphate 1.24mm/L 0.8 - 1.5

I still have some slight symptoms: brain fog, odd aches, a little tiredness, indicating the T3 level is a little low for me even now. I am not sure whether to put forward the case about my T3 level being in the lower end of the range so a drop would not be appropriate and that I want to carry on with 75/100 as before or to argue that I am a poor converter so would benefit from T3 and ask for a endo referral. I would very much welcome any advice on the best strategy. (Have asked for Dr Toft's article and will take that with me to the appointment.) Also, if anyone knows of a open-minded NHS endo in the Bradford/Harrogate/Leeds/York area, please can you let me know by private message.

Also I have added some of the additional test results and would appreciate some advice on the steps I need to take to get them to optimum levels - not sure how much Vitamin D to take etc.

Any finally I would just like to say that I have learnt so much from this forum and very much appreciate it.

[shaws]

Your GP, I think - and am not medically qualified - that he is negligent. The reason being that the following:-

Ferritin 70ug/L 10 - 322

Folate 11ug/L 5.4 - 24

Vit B12 325ng/L 211 - 911

Vit D 67nmol/L 75 - 250

are too low in range.

Other members will respond with advice how to increase these. Doctors always seem to think that 'in range' means sufficient but not when it is near the bottom and not when we have autoimmune diseases.

[louhop in reply to shaws]

That's very interesting - how high in the range should I be aiming for...

[Marz in reply to louhop]

B12 needs to be near the top of the range when Hypo and VitD needs to be over 100. I would suggeste taking 5000 mcg B12 Methylcobalamin by Jarrow on Amazon. You will also need to take a good B complex to keep all the B's in balance. After one pot you could take the 1000 mcg B12 to maintain levels.

VitD - I would take 5000 IU's throughout the winter and retest at the end of summer to see where you are. Important co-factors to take - Magnesium and VitK2-MK7.

[Angel_of_the_North]

No reason to reduce as FT4 and t3 are both in range. B12 needs to be over 500, so you need sublingual methylcobalamin and at least 1000iu vit D3 a day to bring your vit D into range. Is that Free T3? It looks like a total T3 range and is therefore no use.

[louhop in reply to Angel_of_the_North]

Think it is total T3 as there was no indication of being free T3 on the test results

[SlowDragon Administrator]

Your B12 and folate are both too low, but GP unlikely to agree. Ideally them to test for Pernicious Anaemia, but they are unlikely to

Like many you may benefit from supplementing sublingual B12 and a good vitamin B complex with folate in to improve these

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D should be around 100nmol

Many of us find Better You vitamin D mouth spray is good as avoids poor gut function. Available in various strengths. Perhaps try 2000- 3000iu daily. Retesting in 2-3 months

Vitamindtest.org.uk £28 postal kit

Ferritin should be half way in range.ask GP to run full iron panel for Anaemia

Eating liver once a week should help improve ferritin

Selenium supplements can help improve conversion too

Only start one supplement or one change at a time

Are you on strictly gluten free diet? Many with Hashimoto's find it helps or is essential

[louhop in reply to SlowDragon]

Yes strictly gluten free - though to be fair I haven't noticed any change from when I was taking gluten. It was relatively easy for me as I have always cooked from scratch and have not been fussed over cakes and biscuits. The most difficult bit was finding a Marmite substitute - but did manage it in the end. I still haven't returned to baking my own bread but hope to soon.

As for the Pernicious Anaemia, I have always had problems with white blood cells but my red are usually in range - a FBC was done at the same time and these were the results:

Haemoglobin estimation 122 range:115-160

MCV 93 range: 78-100

Haematocrit 0.38 0.37-.47

RBC 4.1 range 3.8-5.8

MCH 29.8 27-32

Red blood cell distribut width 13

I doubt if the GP will do anything with that except say they are in range.

[SlowDragon Administrator in reply to louhop]

Sainsbury's own "marmite" is gluten free.

[louhop in reply to SlowDragon]

That's very useful to know!!!!!Thank you !

[SlowDragon Administrator in reply to louhop]

Coeliac UK have online database of gluten free foods , but only accessible by members.

[louhop in reply to SlowDragon]

Think I will join - sounds very useful

[shaws in reply to louhop]

To confirm or not whether you have PA you need a special test - I believe called the 'intrinisc factor' but you should pop over to the pernicious anaemia forum for their advice. A B12 deficiency needs to be treated as does P.A. Both can lead to other complications.

[louhop in reply to shaws]

Yes - will research this further..... thank you for your time!

[louhop]

Thank you to you all for all the help in levels of vitamins etc. Will start them and see if there is any difference after 8+ weeks or so when I get retested.

[thyr01d]

Hi Louhop - just a word of caution: all my problems escalated when I changed GPs and the new one was keen on having me on a higher dose of Levo. I would, in your shoes and with the benefit of my experience as a guide, explore the alternating days suggested giving you a slightly lower dose combined with all the supplement suggestions in other people's posts to bring everything else in range, and then see how you are.

At that point I would ask for T3 to be re-tested and see where it is in range as compared with T4, it should not be lower in it's range than T4 in its range. I think seeing which way T3 goes on slightly less Levo (T4) and with vitamins etc at good levels will give you a good indication of what your body needs.

Best of luck

[louhop in reply to thyr01d]

Thank you for that - it seems very sensible advice. Just to clarify - the alternating days is what I was on and I was asked to drop to 75mg each day - which I have done. The poor T4-T3 conversion runs in my family - as does Hashi's - which was the only reason why the GP was prepared to request a T3 test. I am hoping that as it has been accepted there is a clinical need for the T3 test, I will be able to request it again - fingers crossed. As I am going to be re-tested I can use that set of tests to find out how much of a difference the vitamins make and if any further steps are required.

[thyr01d]

Hi Louhop, sorry I misunderstood (or probably didn't read carefully!) but glad you worked out what I was driving at.

Very best of luck