New here - need further tests?

[KittyB52]

Hello all.

I have a range of symptoms which my GP has been trying to figure out for a couple of years and at the latest appointment, he mentioned fibromyalgia. He has ruled out B12 deficiency and Vitamin D deficiency (test results in normal ranges, but not optimum). I have been tested for Rheumatoid Arthritis, Coeliac disease and a range of autoimmune illnesses - all coming back negative. My ferritin level (last checked in October) was low, and I suspect I may be anaemic.

The symptoms remain - lack of energy, brain fog, joint pain, restless legs, dry/blurry eyes, weight gain/bloating, dry skin and hair loss, amongst other things.

Blood tests (done last week) showed TSH level at 2.0 (range 0.2 - 6.0) and someone has suggested that I may have thyroid issues, and should push for further testing.

Any advice would be appreciated, thank you.

[shaws]

If you didn't have the earliest possible blood test, fasting (you can drink water) your TSH would have been higher.

You need a Full Thyroid Function Test which is:-

TSH, T4, T3, Free T4, Free T3 and - most important - thyroid antibodies.

If you are in the UK, usually doctors only test TSH and T4. This isn't sufficient.

If doctor cannot do the above, those he cannot you can get privately. We have three companies that do all of the tests required. I shall give you a link. Follow suggestion above re getting the best results. If you were taking thyroid hormones, you'd allow a gap of 24 hours between last dose and test and take afterwards.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

GP should test B12, Vt D, iron, ferritin and folate. Everything has to be optimal.

Tick off your symptoms and show him the list. He still may not diagnose as they have been advised to wait until TSH reaches 10. In other countries it is above 3.

There can be two types of hypothyroidism, i.e. hypothyroidism or an Autoimmune Thyroid Disease. The latter is called Hashimoto's or hashi's and is diagnosed by thyroid antibodies and it is the antibodies that attack the gland - they wax and wane - until the person is hypo but treatment is the same. Gloing gluten-free can help reduce the attack of the antibodies on the thyroid gland.

Alwasys get a print-out for your own records and you can post if you have a query.

[KittyB52 in reply to shaws]

Thank you for your reply. The test was done at around 9:30 last Monday morning after fasting.

I will have a look at those links - thank you.

[shaws in reply to KittyB52]

The third link will surprise you and I am also surprised that the medical profession are so ignorant about symptoms which shoud be a priority along with a blood test. A blood test result doesn't indicate the patient's symptoms which may be many.

[Marz]

What were the actual results for B12 & VitD ? Low Ferritin and Serum Iron will make you feel very poorly but Docs fail to treat these important things when in range - sadly.

Make sure Thyroid anti-bodies TPO & Tg are tested to rule out Hashimotos - the most common thyroid condition globally. Docs do not understand auto-immunity.

Try to resist a Fibro diagnosis - once on your notes everything will be blamed on that. Go for the suggested Private tests - some of which the NHS do not carry out and why people are not diagnosed.

Keep reading as much as possible and asking questions. When you have results start a new post so they are not missed. 😊

[KittyB52 in reply to Marz]

Vitamin D was 83 (range 50-100). This is much higher than previous results done in winter, which is to be expected after the sunny weather we’ve had.

B12 was last tested in March when it was 384 (range 180.0 - 910.0).

Folate level was 5.69 ng/ml [> 5.4]

Ferritin (last tested in October) was 10.6 ng/ml [range 10 - 291]

[Marz in reply to KittyB52]

if your VitD was measured in pmol/L then it would be better at 100 PLUS. B12 would be better over 500 to prevent neurological damage and cognitive decline. Your Ferritin is DIRE and needs further investigation. You need a FULL Iron profile done and Full Blood Count. Did your GP see this result ? - and if so what treatment was proposed ? it is at the bottom of the range - is he/she blind ?

Are you treating the low B12 and VitD ? My B12 bumped along around the 300 mark for years and I now live with the consequences of numbness and my shoes are my feet ! I now self inject once or twice a week.

If you would like advice about supplements then do ask ... Your doctor needs to be sorted and spending a day with your symptoms may help

[KittyB52 in reply to Marz]

GP has seen results. As a result of being in a brilliant Facebook group for B12D, I argued to get further B12 tests done (MMA and homocysteine), both of which were normal. GP has ruled out B12 as a problem, so I plan to start SI at some point. I wanted to know all my other levels first, as I know there are dependencies etc.

FBC was done, but not an iron one. I think he is focussing on the joint pain as being 'something inflammatory' and missing other things.

No treatment proposed, I am taking no supplements as I wanted all test results first.

[Marz in reply to KittyB52]

You need a Full Iron panel done asap. Have you checked the symptoms of Iron anaemia which your FBC could well have revealed.

You have your results now so do you have a treatment plan in place ? Did your FB group say Hcy and MMA were normal or your GP ? Hcy is good around 6/7 ...

You may not need to inject - many are fine supplementing with a good brand of B12 as a lozenge.

[KittyB52 in reply to Marz]

Hello Marz,

I’ve only just seen this, missed it first time. My homocysteine result was 14.3 umol/L [< 15.0]. GP said all results were normal.

After the drama of trying to get some blood for the finger prick test for the thyroid check, it would be great if I didn’t need to SI. However, I thought lozenges were only of use if you know you don’t have absorption issues - or have I got that wrong?

[Marz in reply to KittyB52]

Hcy that high is almost at the top of the range and is better in single figures - even around 7 would be good I have read. Homocysteine builds up in the absence of good levels of B12 and Folate and is a marker for heart issues and strokes. Maybe have a Search on the net and see what pops up from a reliable source. I doubt your Doc knows much about Hcy. Am now wondering what your MMA result is that your Doc thinks normal Am sure your FB group would be giving similar advice as I know one of the girls there who helped me when she was a member here.

Your last B12 test was low as it would be better over 500 ... also do you have the Low Ferritin result ? - normally suggested to be over 70. I would still suggest a Full Iron Profile to check how your serum iron is ...

B12 lozenges are kept under the tongue to avoid any absorption issues in the stomach/gut. They are taken up by the micro-circulation. Jarrow Methylcobalamin 5000 mcg from Amazon - along with a good B Complex .

Hope that helps ...

[KittyB52 in reply to Marz]

GP admitted he didn’t know anything about the tests but after writing to him about NICE guidelines, he agreed to get the tests done.

My MMA level was 172 nmol/L (range 0.0 - 280.0).

Ferritin has not been checked since last October, when it was 10.6 (range 10-291). The note from the lab says “All within limits, but please note lower level of iron stores

(ferritin)”.

I will be having the Medicheck thyroid check test done in a week or two (started taking Feroglobin to see if it helped and it’s got B12 in it so need a clear week before the blood test). The test includes folate and ferritin, as well as B12, so that’s something. I got the the fingerprick kit but failed twice to get any blood, so am having blood taken at a local clinic.

[Marz in reply to KittyB52]

Sounds as if you are making good progress. Have you read up on the protocol for lowering Homocysteine ?

[KittyB52 in reply to Marz]

Not yet, I am struggling to piece everything together. GP has now referred me to a rheumatologist with ‘fibromyalgia’ now as a note on my records. So I am not expecting anything more from him in the way of help.

I will look into the protocol.

Thank you for your help.

[Marz in reply to KittyB52]

Forgot to mention the Ferritin does look very low - often mentioned here that it needs to be halfway in the range - but also more than 70 is quoted. As I mentioned earlier I would insist on a full Iron Panel and FBC if it has not been done.

[KittyB52 in reply to Marz]

Thank you, will do. I have been warned about the fibromyalgia diagnosis, so am hoping to avoid it if possible.

The private tests are more reasonable than I expected, so will look into doing those.

Thank you.

[Marz in reply to KittyB52]

Medichecks have Special Offers on Thursdays. You can also sign up for Newsletters I believe so you are kept up to date.

[KittyB52 in reply to Marz]

Thank you. I have just ordered a thyroid test so can take the results to my GP review appointment (likely in a week or two).

[Marz in reply to KittyB52]

Not all GP's are receptive to Private Testing ! When you have the results you could start a new thread and post them here for comments so you are well prepared when you see your GP

[KittyB52 in reply to Marz]

Yes, I imagine that could be the case. I will post the results on here when I have them.

Thanks again.

[Marz]

healthunlocked.com/search/p...

The above link takes you to the Pernicious Anaemia Society Forum here on HU - where Homocysteine and MMA is discussed more often. There are over 200 posts in the link

[KittyB52]

Morning! I am doing some reading around while I wait to go for my blood test (have been taking Feroglobin for a week or two, so stopping that for a week before getting thyroid test done. Just read about low stomach acid and its symptoms and it sounds very familiar. I have had heartburn for years and been taking omeprazole (which I have stopped now that I know it causes B12 problems) and I have just seen that one of the causes of low stomach acid is under active thyroid. Interesting stuff, but no clue how to get to the bottom of everything and work out what to actually supplement/treat. I thought I was well on the way to a diagnosis, but now I feel like I might be at the beginning again. 😬