Need some advice please about blood results - been on levo for two months now and concerned.

[lulujeanne]

Hello everyone, hope your all having a good day so far

Ill try to make this brief, as I am one who can ramble on and on! I have diagnosed with hypothyroidisim by Dr Skinner in August this year. He has put me on 100mcg levo (i increased slowly up to this by 25mcg each week). Since starting levo, if i'm honest i've felt worse not better. I usually have symptoms of chronic fatigue, depression, anxiety, muscle aches, coldness, anaemia etc. But since starting Levo 100mcg, i've been feeling very faint most days (few times i've had to sit down for fear of collasping!) and very depressed and tired all the time. I've also been experiencing panic attacks at night before I go to sleep (to be fair, i had this before I started levo), but they have seemed to get worse.

Long story short, when I had my last serum b12 taken, it said 227 on my printed out notes, so I started looking into it as per advice of members of this forum. I spoke to my doctor about this a month ago and she said my level was fine. However when I started researching into the symptoms, if i'm honest I had more symptoms of PA than hypothyroidism. I've posted on the PA forum and had good advice, and contacted the pernicous anaemia society. They said they think I may have PA but the blood tests wont show this accurately, so adviced me to think about going private. Well to be honest, its a struggle paying to see Dr S at the moment as I am at university and have a low income. So I deciced to go back to GP and bring the evidence with me. I saw her yesterday, argued my case that I need B12 injections (certainly treatment at least) and she kept saying your levels fine! Infact they were 295, which confused me because I was sure it was lower! Anyway because I kept insitting on treatment, she asked me to make an appointment with one of the partners of the surgery, as she cannot prescribe me b12 injections without clinical markers to support this. I felt quite deflated after this, but proud that I fought my case. I am wondering now though whether i do have a b12 deficency as my bloods are normal (june 2013).

She questioned me about how levo is going (she never agreed with Dr. S that I have hypothyroidism, but she agreed to a trial of Levo). She said that according to my blood results that were taken a week ago, my bloods are now presenting as hyperthyroidism.

Heres my blood results:

tsh: 0.3 (was 2.5 in June)

T4: 16 (was 9.8 in June)

T3: 5 (first test)

To be honest, I am wondering if I am overmedicated or not? I do feel that my T3 may show a conversion problem. I will post their ranges on monday when I get a copy of my bloods from my GP. I am planning to get in contact with DR. S about this too.

With my results the way they are, its making me wonder if I do actually have a thyroid problem or not? I know it sounds like i'm doubting Dr Skinner, and I know he did take alot of my physical symptoms into account and argued that my thyroid is slightly swollen. But with all the battles ive had with my GP, I doubt my diagnosis sometimes. My TSH was normalish compared to others when measured in June and I have not put weight on (I tend to lose it easily and gain it easily) like manypeople do with hypo.

Anyway any advice would be greatly appreciated

Thanks,

Louise.

[lulujeanne]

forgot to mention I take a iron, b12 and folic acid suppliment. I also take a vitamin D sublingual spray 1000mcg.

[Hidden]

Way to go Lulujeanne, well done with the doc. When looking for their "clinical markers" make sure they do the antibody tests on you - anti-intrinsic factor, anti-parietal cells, and you could push for the Active B12 referral, although you've been supplementing so it will be skewed. I'd be interested to know what else they consider to be a clinical marker? I don't think B12 levels in the 200s are normal, and it is common for levels to swing around between tests for no reason - I've seen this a few times lately on the PAS forum. It's such an unreliable test. Bring Dr Chandy's treatment protocol to give to your doc, there really wouldn't be any harm in a trial of B12 injections:

b12d.org/sites/default/file...

Re the hypo, you could easily have both conditions. You say you're hyper but that's only based on the TSH - your T4 and T3 which are the important ones are well in range (although I'm basing that on the usual ranges, it might be useful to add your ranges in). Your GP is obviously clueless and is just looking at the TSH and ignoring the T4 and T3...

H x

[lulujeanne in reply to Hidden]

Thanks hampster, if it wasn't for your advice and others on this site I wouldn't have got this far I mentioned these tests, as GP said ' you certainly don't have PA' and i was like 'really, well thats interesting because i havent had any tests to rule it out either!'. I also took Dr Chandy's treatment protocol with me, as I was having difficulty finding anything else. I also printed off the B12d charity summary of a recent BMJ article about treatment of b12 too. It was very telling, even if the person has a moderate deficency (which according to their markers I fit into), a theraputic trial should still be commensed. I showed my GP this and Dr chandys protocol (filled out the symptoms list too which shows I have over 5 body systems affected and some neuro involement) etc etc and she just got her BNF out and said, you dont have PA (??) and so your only option is oral B12. I found this strange as she said 5 minutes before this that my b12 was completely normal. Don't know if i said this in my post, but in the end she's asked me to see the partner of GP surgery, if he says Yes to B12 injections, then she'll monitor! argh so i need to wait until end of the month now and argue my point all over again!

In regards to my thyroid, i might have wrote this incorrectly, she said I could go into hyperthyroidism if these values continue. She did discuss my t4 & t3 briefly, she said T3 was normal (whatever normal means!) and t4 was elevated. But she hasn't stopped my levo, but said she doesn't think my meds are not working and that I should 'be careful'. I think that means she doesn't believe Dr S's diagnosis nor his recommended treatment. She said shes been working with me, and trying to go with what I want, well to a degree thats true, but then I feel like she's trying to cover her back at the same time.

In your opinion Hampster, is my T3 normal then? my t4 has shot up quickly, but its not above the top end of the scale, but does concern me. I feel their may be a conversion problem here, but dont sure. Could be too early to tell. With the symptoms i'm having and thyroid test results (as listed at top of my OP) do you think i'm showing signs of overmedication ? or could it be something else? at any rate something is not right with levo dose at the moment. I dont see Dr Skinner again until next month, but that's not too long to wait I suppose.

I'm feeling like I am on a dead end road at the moment, and my GP certainly wants to put doubts in my head, but doesn't want to take the time to find out whats wrong, unless I insist on it!

I don't have a medical degree, but I feel like i know more than her about thyroid disease already!

anyway talk soon,

Louise.

[Hidden in reply to lulujeanne]

"she just got her BNF out and said, you dont have PA (??) and so your only option is oral B12"

Oh my goodness how I would have loved to have been there, I think she's pulling a fast one on you - look at my big important book, it says you don't have PA so you don't!!! The BNF is for guidance on prescribing, not for diagnosing, see here:

bnf.org/bnf/org_450002.htm

"The BNF includes key information on the selection, prescribing, dispensing and administration of medicines."

Now this is what section 9.1.2 says:

evidence.nhs.uk/formulary/b...

And this is specifically what it says about hydroxocobalamin:

evidence.nhs.uk/formulary/b...

I suspect that your doctor is falling into the trap of many before her, in thinking that you have to have megaloblastic anaemia in order to have PA. This is unfortunately the way the NICE guidelines are written, because they are drawn up by haematologists. The PAS have been campaigning to get the NICE guidelines rewritten, but it's at least a year or 2 away.

It is totally incorrect that you have to have anaemia to have PA, and there are many many studies that back up this fact. I'm quite happy to PM you some studies if you like, so that when you see the other doctor you can counter that side of the argument straight away. The ignorance out there about this really gets me down.

On the thyroid side, I can't really understand why she would be worried about a T4 of 16? I mean that's usually about mid-range, the top being around 22? What is your lab range? I mean I guess if it kept rising rapidly then yes, you'd go hyper, but I wouldn't say you were there yet. I'm starting to pity the rest of this woman's poor patients.

H x

[Muffy]

If you are taking a B12 supplement, then that would give a false reading on your B12 blood tests.

[Muffy]

Is there a possibility that you need slightly less thyroxine?

[lulujeanne]

Thanks Muffy,

My b12 blood result was from June, before i started supplementation. I had my numbers mixed up before as I thought it was lower than it is. Yes i agree, i may need to reduce my thyroxine, i only have 100mcg tabs at the moment though, so I will need to ask for 50's and 25's when i next see my gp. I think reducing to 75mcg may help.

Still wondering if I have a conversion problem though, but i'm not an expert!

Can I ask if you have taken levothyroxine, and if so how it affected you (postively or negatively). I know i may need to be patient but it is difficult when i'm getting worse

Lou.

[Marz in reply to lulujeanne]

Don't think you have a conversion problem - the FT3 is at 5 and the ranges at my lab are 3.50 - 8.30. Maybe just very slightly - perhaps 6 would be better. Wonderful advice from Hampster1 - do think getting the B12 to a better level will help - also the VITD. Did you have your ant-bodies tested ?

[Daisybean]

Here's my tuppence worth. Get a hold of your antibodies results, and get them all printed out. Do you have an autoimmune condition? That's very likely and VERY important to know. As soon as I found that out for myself and went down the road of treating that as best as poss - gut issues - all the pieces of the jigsaw fell into place. Ask for a print out of these results and if they are elevated, start reading and treating. In my humble opinion it sounds as though you might be over medicated with T4....but that is a very humble opinion. Selenium (taken with Vitamin E) is a good supplement to use for conversion of T4 to T3. I reckon you can take all the thyroid meds known to man, but if you have an autoimmune condition being ignored you can only go so far with treatment. Why doctors ignore this is beyond me.

[shaws Administrator]

This is what Dr Toft of the British Thyroid Association says about prescribing levo:-

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.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

While taking both hormones it is important serum TSH is normal and not suppressed.