No joy after seeing Endo yesterday, need advice on what to do next.

Afternoon

I'm feeling exhausted but not too disappointed of the outcome of my appointment yesterday with a new endo (same old, same old).

My new gp was reluctant to get me an endo appointment but I said my T3 was too low and I wanted it investigated, he agreed to go with it just so that we could "close the door on this topic-as I'm barking up the wrong tree". My gp said he knew a good endo but I said I wanted to choose my own, he didn't object but called me a few times saying that his endo of choice looked at patients symptoms, even if numbers didn't add up! I didn't quite believe him so I did check him out via Google and he defiantly was a Prof/endo I didn't want to see but thought I'd give it a go anyway.

Feb/March 2014 blood results:

TSH 0.57 range (0.20-5.00)

FT4 16.9 range (10.0- 26.0)

FT3 3.8 range (3.6-6.4)

D3 52.6 nmol/L range n/a (see below)

B12 236 ng/L range more than>183 (I know it's low, I'm working on it, thanks to this website)

Ferritin 29 range 13-150 (see above)

Thyroid Peroxidase Antibodies <33 kU/L range < 59 kU/L

Finally got an appointment for July 14 but I didn't get to see the Prof, I saw his assistant instead, they apologised and said I'd get to see him next time. Anyway, lots of blood was taken, nearly fainted and was sent home and told to come back in 3 weeks.

3 weeks later- August 14 appointment was yesterday. Saw prof's assistant again to go through results. I asked her when I was seeing Prof, she said he was busy and would pop in to see me.

When he did see me he asked why I had come to see him, he wasn't being nice about it, he wanted me to explain why I thought I had a thyroid problem-from then on we didn't see eye to eye. He said he'd spoken to my gp via telephone and discussed my concern. I told him straight that I only came to see him because my gp said he treated people and not numbers-he laughed and tried to lecture me and drew diagrams of how the thyroid worked. I mustered up the strength to defend myself and then just asked him to tell me about my results, he said he'd look at them again, as he'd only just been given them 5 mins ago. He wasn't interested in me at all and it's obvious he just skimmed over my results and said you have no thyroid problem at present, you may have had in the past and you might have in the future, as it's in your family, so I will tell your gp to keep you monitored. This was the least he could do after the run in we had.

So here are the results:

TSH 0.21 mU/L range (0.55-4.78) Low

FT4 16.0 pmol/L range (10.0 -22.00) Normal

FT3 4.7 pmol/L range ( 3.5- 6.5) Normal

Cortisol 269 no range

B12 155.0 ng/l range (193.0-982.0) low

Serum Folate 8.9 ug/L range (3.0-17.0)

Ferritin 19.6 ug/L range (5.0-148.0)

Zinc 7.9 umol/L range (12.0-22.0)

Vit A 0.89umol/L range (1.05-2.97) low

Magnesium 0.93 mmol/L range (0.60-1.00)

Selenium 1.95 umol/L range (0.80-1.50) high

Vit E 13.3 umol/L range ( 13.9- 47.0) low

Blood Manganese 193 nmol/L range (70-280)

Vit B1 190.7 nmol/L range (66.5-200)

Vit B2 273 nmol/L range (174-471)

Vit B6 60 nmol/L range (35-110)

I know some of my vits especially my B12 (awaiting intrinsic test result before treatment) need dealing with ASAP but does anyone have any ideas what I can do next or where can I go for help? I've been ill for 25 years now and still suffering- came off antidepressants 2 years ago (after 20 years of them) as I wanted to know what was wrong with me. Grandmother has Thyroid, 3 Aunties have thyroid, my Mother has been ill most of life, no diagnosis and now my son is showing symptoms.

Saw Dr Peatfield last year and was put on Nutri thyroid and Adrenals but became toxic. I was due to see Dr skinner before his passing so saw another endo who thought I had thyroiditis but came to conclusion of Chronic fatigue.

Sorry for the long message wanted to put as much info as possible and rant a little too

I really do have brain fog after writing all of the above, I'm not even going to tell you how long its taken me

Thanks in advance

x x x

[Clutter]

Priscilla, Is it hyperthyroidism in your family? I'd certainly ask for another thyroid function test in 3 months as your TSH is dropping and your FT3 has risen quite a bit since Feb/Mar.

Your ferritin is low and should be 70-90 to be optimal. There are a lot of vitamin deficiencies which need addressing in addition to your B12. I think you need to speak to your GP about them before supplementing and ask about the high selenium result too.

[Hidden in reply to Clutter]

Thanks for your reply.

No, they are all hypo

I'm seeing my gp next week to sort out the vits, meanwhile it seems I have to just wait for the next blood tests

[Clutter in reply to Hidden]

Priscilla, I forgot to mention that negative thyroid peroxidase antibodies usually rules out autoimmune thyroid disease (Hashimoto's) although sometimes thyroglobulin antibodies are positive for Hashimoto's.

My family had Graves but I had Hashimoto's so it doesn't always follow. I think a TRab test for Graves may be warranted if your TSH goes down further. Let us know what the GP says about the vits next week.

[Riverfrog in reply to Hidden]

Priscilla1970, This must be very difficult for you, not a good reception with the endo.

Are you already taking any kind of thyroxine medication because if not Clutter is right about your TSH being low and which rather points to Hyper not hypo.

Certainly it seems to me strange (if you are not on medication) that you have a low TSH.

My TSH is almost as low but I am on Levothyroxine and they have told me to cut my dosage immediately.

It is good that they are looking at B12 and the other results that are not normal.

We hope that it is all sorted out for you and someone can find the problem and get it treated.

[Hidden in reply to Riverfrog]

Hi Riverfrog

No, I'm not taking any medication, spoke to gp this morning and asked if he'd run some more tests for antibodies-as suggested by Clutter. Got an appointment for next week, as I couldn't even get myself there this morning, felt soooo rough.

[claudiasmum]

I would get the vitamin levels sorted out and take it from there. Getting my B12 sorted made a massive difference to my well being.

[Hidden in reply to claudiasmum]

I'm just waiting on a b12 intrinsic result to see if I absorb, I sadly react to the injections but have read Jarrows do a good tablet.

Looking forward to getting this b12 level up-do I aim to get it as high as possible?

[Hidden]

I keep asking for that test but gp keeps saying he's done it, I thinks he's confused with the peroxidase antibodies test.

Do I have to get the thyroglobulin antibodies and TRab private or can gp do it?

Thanks for your time, you guys are pretty special

[Clutter in reply to Hidden]

Priscilla, GP can order them IF they will. Thyroid Peroxidase (TPOab) is the usual test for Hashi's but there are people who are negative TPOab but positive when thyroglobulin antibodies are tested. It's uncommon but no means unknown to have positive Graves and Hashimoto's antibodies. You can order private tests from thyroiduk.org.uk/tuk/testin...

[Hidden in reply to Clutter]

Thank you, will ask gp to do tests, otherwise will get private tests via the link you suggested.

Great help-Thank you.

[Hidden]

Both endo and gp sound like tools. Being a tool is the rule in the nhs rather than the exception. Sorry but couldn't resist commenting.

[Hidden in reply to Hidden]

Ha ha, that made me laugh Thanks

[cario]

Tools is an insult to tools.... at least some tools have a useful purpose

Hi Priscilla

I'm quite new to all this, am seeing Dr P and currently very slowly increasing the nutri adrenal and nutri thyroid and it's quite a bumpy road. Also have very low ferritin and am trying to raise my B12 too.

I haven't even gone down the route of RT3 or antibodies, I'm having to take this in a bit at a time...

It seems to me that quite a few people go down the road of seeing the lovely Dr P, but something goes awry and they end up kind of on their own or back seeing an Endo who is useless.

When you say you went toxic on the Nutri stuff, can you give a bit more info?

Have you considered seeing another alternative practitioner? I have heard of one or two that people are finding helpful.

It's important to have someone we feel is on our side and who is knowledgeable and experienced.

Caroline

[Hidden]

Hi Caroline

I agree, there's so much to take in but just take it slowly and monitor weekly if you are feeling better or not.

Dr P does seem to help a lot of people but I saw him last year just before he became ill and found that I was not helped enough while taking the treatment, which is understandable since he was quite poorly but I was struggling taking the treatment and felt that I just didn't get enough support.

I took nutri adrenal and nutri thyroid for about 4/5 months, along with b12 and iron. Eventually Dr P said I was probably toxic- the thyroid pooled in my blood instead of being used by the body, this was either because my vits were too low or because I didn't need the meds or they didn't work for me. I just came off everything as I felt so ill. If I knew what I know now, I should have stopped them sooner than I did, as they just were not working for me but I persevered hoping to feel better.

The treatment might work for you, like I said if you are improving weekly and it continues then great but if you feel like things are not improving then question it and Dr P will investigate and he will probably recommend the tests like the antibodies etc.

I would see an alternative practitioner again but like you said, as long as they were on side, knowledgeable and experienced

Hope this helps

[Churchie in reply to Hidden]

Hi Priscilla

Can I ask what you mean by toxic? What were the symptoms ?

Thanks

[Ctb567]

You may be struggling to get the dr's to cooperate but I'm amazed that you got them to run all those vitamin tests, I've been trying to get those done for ages and I've been told I don't have a chance! This may be stating the obvious but have you been tested for Coeliac disease? Once you have one autoimmune disease you're more likely to get others and the vitamin deficiencies would indicate there is something wrong with the way you are absorbing things. Its rare for someone to get a vitamin A deficiency in the west because its in so many every day foods and dr's usually say that if your b12 is low (with no dietary reason) then there is definitely something going on in your body. I saw an endocrinologist and when I had a few deficiencies he sent me to a gastroenterologist, perhaps they will do the same for you?

[ukangell]

What were your toxic symptoms?