Despairing - I don't know what to do next

So some of you may have seen my recent posts, re new blood tests done via GP, TSH high, free T4 low but in range. GP told me to wait 3 months and retest. I've had enough of waiting while my life crumbles and I get worse! So I'm changing GPs.

Also I have an appointment with Dr Peatfield Dec 13th all fingers crossed that goes ahead...

I think my biggest question right now is whether to get some private tests done for the rest of my thyroid bits, T3, thyroid antibodies for example.... or seek out a gp which will do these on NHS. I'm pushed for time though, and don't see this happening before Dec 13th especially as I'm away for a week in the middle!

Plus I have a very mild cold and don't want this to affect my tests?

I've had other things flagged on my test results from nhs (folic acid and vit d) and so I've started supplementing these and b vits as they're low but in range.

What do I do first?? I also want the saliva adrenal test before I see Dr Peatfield too, so I'm thinking I'm going to have to pay for private tests Even tthough I don't have the funds.

Any suggestions welcome xx

22 Replies

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  • Tinkerbell22,

    It is protocol to wait up to 3 months to retest after the first abnormal TSH result as a non-thyroidal illness or virus can elevate TSH.

    Your GP can order thyroid peroxidase antibody (TPOab) blood test. If that's positive it confirms autoimmune thyroid disease (Hashimoto's). If it is negative it may be worth ordering a private thyroglobulin antibody (TbAb) test as some people are TPOab negative but TgAb positive.

    FT3 is rarely tested in private practice unless TSH is suppressed <0.03. There's no point in ordering a FT3 test when TSH is >6. FT3 will be low due to low FT4 or may be quite good due to the high TSH stimulating conversion.

    It would be helpful to have the tests before you see Dr. P.

  • Clutter,

    Thank you for clarifying the protocol, I didn't know this. I thought they were just being slack! But of course if they'd taken the time to talk through my results better then perhaps they could have explained this...

    Ohhh so having even a teeny tiny cold about me could increase my TSH? I didn't know this. But then my last TSH levels 2 years ago were 4.6... and I wasn't ill then.

    I was happy I'd finally got my results to explain my symptoms, re my thyroid. But now I'm crushed to see nothing has changed in their approach. So would changing drs help or just send me round in another circle? This is sooooo frustrating and upsetting it makes me want to give up but I Can't!

    So it sounds like the antibodies test is the next best step, and I tthink the only way to get that in time for 13th Dec will be to do it privately. Unless I can get a speedy change of dr appointment but I doubt that.

    Thank you re T3, I'm still trying to get my head around it all and this is a useful nugget of info.

  • Tinkerbelle22,

    It's most unlikely a cold will have any effect on TSH. It's likely you are hypothyroid as your TSH was high 2 years ago and is higher now, but protocol suggests waiting 3 months just in case it is due to non-thyroidal illness.

  • Thank you Clutter, that helps

  • tinkerbell22 You don't have time to get a saliva adrenal test result back before you see Dr P on 13 December. Once you've sent the samples off it usually takes between 2-3 weeks for the results. You could, of course, do the test and send the results to Dr P after your appointment for his comments.

    A Blue Horizon or Medichecks thyroid test should take no more than 48 hours to be e-mailed the results after receipt of the sample but make sure you don't post your sample off on a Friday as there's no-one at the lab at the weekend and your sample wont be viable by Monday when they return.

    I would wait until you're over your cold for any testing.

  • Oh no that's annoying re the saliva test! SeasideSusie :( but thank you for letting me know. Hmm but yes could still do them and send to him, I guess it would still help.

    Very good point about not sending on Friday thanks!!!

    The trouble is this cold is like something that just appears once every few days. I take a vitamin c and it goes. Maybe it can't go because I'm too bloomin exhausted because of all this going on with my health.... vicious circle. Despairing again. Should I just not get anything tested, rest up, wait for my appt with Dr Peatfield and onky have the tests I've had done (which may be biased by my cold?)

    I feel like I'm going round and round in circles and the clock is ticking on and on :(

  • You could send for the test and wait until your cold goes before you do it. There's no time limit on when you have to send the sample in, you've already paid. I've got two tests sitting here and will do them in January. As the results are back so quickly you might be able to get them done before you see Dr P.

    Are you only taking the Vit C when your cold comes on? It's something we should be taking all the time. As well as helping the immune system it supports the adrenals. Dr P recommends 2000mg a day I think but some people take more.

  • That's another question I had, re vit c lol. Soooooo many questions my brain hurts :D

    I guess I wondered if I was having more tests then I should hold off taking new supplements. But if I have a cold about me, then I can't take the tests and need the supplements to shake it off.

    The one I take is 500mg slow-release. I initially took It twice a day (1000mg) and got extra energy from it. But then I ccouldn't sleep! And then got a mega mood crash when it wore off! Taking one a day, just 500mg, I found isn't as bad.

    I had another question... I love echinacea but have seen mixed info online about autoimmune diseases and echinacea. Is it safe to use? It helps so much with getting rid of a cold. But again only taken it occasionally with this tiny cold because of worry of upsetting test results and not knowing if it was ok to take.

    Thank you so much for your help

  • It can be very confusing when there is conflicting information on the internet about things.

    I've never taken echinacea but I do have other ways of boosting my immune system.

    I have to be extremely careful and try to avoid catching coughs, colds, etc, as I have a lung disease, also a colonised lung infection which can flare up if I catch any sort of bug. I can no longer take the only antibiotic that deals with the colonised infection because of bad reactions to it, and if it does flare up it could put me in hospital for IV antibiotics so I want to avoid that.

    I take 3000mg powdered ascorbic acid Vit C in 3 divided doses throughout the day. I also take a garlic supplement in it's most active form - Allicin liquid. Plus from October through to April I take a homeopathic flu preventive called Oscillococcinum, one tablet per month (I ring up a homeopathic pharmacy, they so polluted or liquid, and post it out to you at a very reasonable cost). It seems to work for me, I don't remember the last time I had a cold, and I'm going back many years.

    If the form of Vit C that has caused you problems was ascorbic acid, there are other forms you could try. Magnesium ascorbate I believe is the one ascorbate least likely to cause problems, or there are wholefood Vit C supplements or Liposomal Vit C but they're a lot more expensive. Or maybe it was the fillers in the slow release tablets causing a problem. I try to take supplements with the least additives, don't want to add to the problems I already have!

  • I know the feeling re trying to avoid bugs etc, but mine isn't for such intensely serious issues as yourself, which I'm very sorry to hear about. I'm glad you've found a regime that works well! My regime so far has to be to stay indoors lol... and not see anyone! But also from being to exhausted to... not good either way.

    Thanks for saying this about vit C options. YYou've jogged my memory, I looked into this a few years ago! Thanks!

  • When we are going through such a bad stage as you are at present, we are desperate and three months seems like a lifetime away - which it is when so unwell.

    Dr Peatfield is of the 'old school' thankfully and he must be the last in a long line who diagnosed by symptoms alone that's why he was forced to surrender his licence as the 'authorities' were pursuing him as he was diagnosing and prescribing as taught to do as a student, just like Dr Skinner and others who lost their licence and also because they were willing to prescribe other than levo if the patient wasn't progressing.

    If you read the book 'Tears Behind Closed Doors' a story so horrible that it deserves being read written by Diana Holmes who was diagnosed by Dr P and then worked with Dr Skinner.

    I wouldn't be surprised there are still lots of 'Diana Holmes' particularly if they don't have internet access.

  • Yes Shaws it does indeed feel like a lifetime away, 3 months. Because at the moment I'm clinging on by a thread financially.... if I get worse within these 3 months I won't have an income. And then what? I honestly don't think 3 months is an option. I know I won't be better immediately on meds, they take time to work. But they'll take even longer to work if I'm not given any! Sorry, ranting, not at you or but the system and being at the end of my tether :'(

  • Everyone would sympathise with you. Get a print-out of your results with the ranges tomorrow (we are entitled by law) and post and see what responses you get. I personally think (and not medically qualified) you should start if it's recommended by the other members too. Considering it may take years before we finally get to complain to a GP about our symptoms. You have to support yourself, your GP isn't going to do so.

  • Just a quick reply Shaws, here's a link to my post with test results from the other dAy

    healthunlocked.com/thyroidu...

  • Your B12 is very low. You should supplement with sublingual B12 methylcobalamin. Within the following link look at Marz's posts re B12. She has had nerve damage due to low B12 and also it has been reported that dementia/Alzheimer may be connected to low B12 too.

    healthunlocked.com/thyroidu...

    I am not good at blood tests but your FT3 is low and that could be the cause of you feeling unwell. T3 is the active hormone required in all of our receptor cells so I'd say you need levo.

    I believe Vit D should be at least 50 so you will have to talk to the doctor and he should prescribe supplements.

    Vit D and Vit B12 are not vitamins, they are pro-hormones and are vital and should be optimal. Ask GP if you could have an intrinsic test to see if you may have pernicious anaemia.

  • Feeling calmer today, I've got a plan :) my priority must be to heal from this cold. I can't be sure of further tests until this cold has passed. And I must chill out to manage that. So am trying not to rush myself. Also a priority is to change to a different GP surgery.

    I'm taking Lamberts Methyl B complex for now, just started. What are the benefits of sublingual? My stepdad has got me a vit D spray for under my tongue... he and my mum see a nutritionist and she recommended this spray plus the methyl B complex tablets, hence they've bought these for me.

    I was taking folic acid 5mg prescription from drs yesterday and day before, but found these are upsetting my stomach, and there's debate on my thread about my test results as to whether I may not be digesting this properly... etc. So decided to stoo the prescription today, and just have the b complex which includes some folic acid, until I can a) see Dr Peatfield 13th Dec, and b) find a better gp and see what they all say too!

    I read up a bit on B12 on STTM website this morning and can see what you mean!!

    You mentioned my T3, did you mean my T4? As I didn't have a T3 test, but did have T4 tested.

  • The B complex tablets you are taking should be fine but I think they will contain all of the b's. What we need is B12 only to bring up B12 level. Sublingual dissolve under the tongue and, as far as I am aware, go directly into the blood stream. Most of us might have stomach issues so sublingual might be best for B12.

    Just to complicate blood tests, we can have a T3 and T4 tested but the more important ones are Free T4 and Free T3 but rarely are they taken. Most labs only do TSH and T4. I shall give you a link which tells us why Free's are important and I think only for the initial test.

    Look down the link to read about Free T3.

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

  • Thank you, this is all very helpful! I'm sure you must be repeating this info to everyone lol, so thank you for your patience xx

  • Sorry Shaws I sent my other message too quickly... I am taking vit D3 1000iu (just started) but will likely change from this to the spray from my stepdad as that sounds better.

    I have made a note to ask my new gp (once I find one!) ro test for pernicious anaemia. Though I need to look up what that means lol!!!!

    Thanks soooooo much for your crucial help

  • Pernicious anaemia is another autoimmune disease. I have it and so did my mother.

    As I mentioned both B12 and Vit D are pro-hormones rather than vitamins and if we don't have regular injections of B12 if we have P.A. there can be serious consequences. We need both levels of D and B12 to be near top.

    PA also changes stomach in that we cannot absorb B12 and have to the injection every three months, so I hope you don't have P.A.

    Our B12 level should be around 1,000 but most top of ranges in GPs tests are about 600 but doctors are happy if we are at the bottom of range rather than top.

    It's a big learning curve for us when we find out doctors don't know much about how best to treat us to get back to good health.

  • Thank you very much for this info Shaws. I've started the process of registering at a new gp practice so I will see how open they are to testing for this. It will take time tho...

  • So now I feel really stuck... I've tried taking supplements vit D3, methyl complex B, vit C and prescription folic acid and I ended up feeling very candida-like (brain fog worse, dizzy, aching, sore throat, hot stomach, biley, just yuck...). So last night I decided to stop them all and reset. I ate/drank things that help reduce candida feelings in me (probiotic natural yoghurt, water, etc) and started to feel better. But today I'm slammed down by exhaustion even worse!! And mood very low. Is this because the supplements were helping my energy levels and mood, even though at the same time they were causing a rise in candida? I feel like I can't win, can't take anything, but taking nothing is just as awful!

    Got 2 weeks till I see Dr Peatfield and hope very much he can help. But I just don't know what to do with myself in the meantime I feel so rotten :'(

    Trying to eat things that naturally have the things I need in them, but tough as I'm too exhausted to cook!

    Whag on earth do I do?

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