Self medication/St Bart's

Hi all,

I am at breaking point once again and have some questions I would really like some support with, so thanks in advance to anyone who responds.

I managed to get Armour via my Endo over a year ago. This has been a painful process of never knowing when I would get repeats, many blood tests etc, but then after a year or so he retired. His replacement I saw before Christmas, said she had not been trained in Armour and would not be comfortable increasing my dosage (usual stuff about heart attacks, osteoporosis blah blah). I told her at the time I didn't feel optimal and suspected I needed an increase. My blood was tested and my TSH had gone from 0.01 to 0.3. I said I felt best when suppressed, but she wrote me a letter saying this increase was good and discharging me. Over the next 6 months my symptoms have become increasingly bad. I've had hair loss, weight gain, I am permanently freezing to the point that my boyfriend won't let me touch him sometimes, my periods have become erratic, I'm depressed and have had suicidal ideation, I'm late taking my son to school every morning and have to nap in the middle of the day. Basically I'm going back to square one. My GP wants to help but just doesn't really know what to do I think. He can't increase my dose without the endo's say so. I feel like I am shutting down.

In desperation I went to see a private doctor in WInchester who is on the Thyroid UK list. He took blood and my TSH is now at 1.2- I know I felt terrible at this level before. He said my T4 is slightly low and my T3 is within range. I explained how I felt and he has asked me back for another visit in two weeks, but to be honest, I think he just wants more money out of me. He uses several techniques that have been proven unreliable and I later found out he is under terms from the BMC (I think) for misleading cancer patients about his treatments. I thought he would treat based on symptoms and my increasing blood levels, but he didn't take my temperature or test other hormones or anything. He has cost me over £400 so far, but i have no faith in him. When I've asked him for explanations for things he has been very defensive. I'm going to see him again purely in hopes I can convince him to raise my levels as it is so obvious this is what needs to be done.

In the long term I think I have two options 1) My GP says he will refer me to St Bart's or Guy's in London as these are both supposed to specialise in thyroid issues. I've heard Bart's are good particularly, and I wondered if anyone had visited them or Guy's, and if you could recommend either a specific doctor who will listen, or if there are other NHS specialists you could recommend (pm me if you need to). I can't afford private for life.

2) Self-medication. I truly feel like I can't go on waiting for the NHS to treat me properly, my life is ebbing away, my relationships are being affected, my work is suffering, my son is having to cope (he has T1 diabetes and coeliac just to add to the NHS joy- you should see how the other half live!). Enough is enough. I feel like all I need is 0.25 grains, maybe 0.5 max. I've told my GP I will self medicate and just come to him for tests if I can't get support from the NHS. I need to feel better to start dealing with everything again, so I want to order some Armour online from a reliable source. I have found a pharmacy ending in .com which is family run which I think might be good but I would really like some options as to other pharmacies as well. Does anyone else self-medicate and can they recommend resources or pharmacies? i have thyroid uk, STTM books and leaflets and a few other books eg Barry Durrant-Peatfield etc. I'm pretty sure I can do the maths. If I go self-med full time I want to transfer to nature throid as they are cheaper and supposedly better. Is there much difference between them and Armour?

Anyway, any advice and guidance on the above would be massively appreciated is anyone has any words of wisdom. I just want to stop feeling like I'm spiralling down a massive abyss physically and mentally. Thank you so much if you've read this far.

Endo recommendations and where to obtain NDT via private messages please in line with posting guidelines #22 and #24, thank you.

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22 Replies

  • Electrica, do you have the T4 and T3 results with the lab ref ranges which were done recently? Being in 'normal' range isn't the same as optimal. If your T4 and T3 aren't high in range there is certainly room for a dose increase. TSH is usually low/suppressed when on NDT because of the T3 in it so it does sound as though you may be slightly undermedicated. Perhaps increase your dose by half a grain for six weeks and see whether that helps with symptoms before seeing the Winchester doctor again.

    Email to see whether any of the Barts/Guys endos are on the list recommended by members. You can post doctors' names to request feedback via private messages.

  • Hi Clutter, thank you so much for responding so quickly! I agree about the reference ranges and scope for increase and I agree it's probably a slight increase needed. The trouble is getting the endo to agree that as they have their parameters they won't step outside of. I have downloaded the Armour pharmaceutical literature so will look to see if I can find some back up in there.

    I will also email louise as you suggest. Thanks again :)

  • Have you tried cupping or acupressure or acupuncture? What about an osteopath?

  • thanks for replying. I know Armour works fine for me when at the right levels, I just need an NHS endo who knows what they're doing. Thanks for replying though, I do appreciate it.

  • I don't believe the kind of doctor that you want, exists. If they are part of the system, it is rare. You don't have to feel bad about self treating.

  • you could be right! I just don't want to pay for my medication or overdose by accident

  • You can't over dose by accident..go to the stopthethyroidmadness website, they have dosing guidelines. The meds were not that expensive, last time i checked. Whether you choose to get well and self treat or remain ill, is your choice at this point, or so it seems.

  • That is like putting a band aide on a bullet wound, if her pain is from Hypothyroidism!

  • I haven't tried Armour but a few other NDTs. I did find Nature-throid suited me and I felt good. The difference is that Nature-throid is hypoallergenic.

  • ah ok thanks- I don't have any known allergies, Armour has been fine until I needed an increase. Do you self-medicate? If so do you have any wisdom to pass on?

  • I did but I had seen Dr Peatfield and Dr Skinner (RIP) and carried on myself when Dr S died. Dr Peatfield cannot prescribe as he was also hounded by the GMC. He also treated patients as we was taught(like Dr S) and used to prescribe NDT or T3.

    I am on T3 only now and am fine, thankfully. As good as I was on Nature-throid. I also didn't have allergies.

  • Save your cash ditch that endo and report him to louise so she can remove him from the list

    then simply self know you need more and theres sites you can order from

  • I have to be honest, i think he's a quack- I may report more fully on this to see if anyone else had similar opnions but apparently Thyroid UK have been working with him for 15 years so I don't know if I'm being unfair.

    Do you think there are any risks to self treating? I'm wary of estranging the NHS totally. Do you know of any reliable pharmacies online? (pm me).

    Thanks once again :)

  • At least tell Louise your experiences with this doctor..she needs to know.

  • Since you are already on armour but not enough simply order some from websites others will send you

    the nhs will be none the wiser

    simply take as much as you need to feel well

  • that is a very good point, I can still get the bulk of it from them I guess and just order top ups.

  • Lateral thinking is the way fwd

    then when you have been on a higher dose and are rid of your symptoms for say 2 years go back to the original NHS endos replacement and persuade her your right

    Mind you i fear the NHS is hell bent on stopping anything other than levo very soon irrespective of its bad effects

  • I agree- I don't think they are getting more lenient, if anything it's the opposite. I've just ordered from one of the online places. I am excited about getting back to full health. I think I'll trial a quarter grain for a month, get a blood test, see where I am and maybe adjust up another half grain, then present it to the endo- hopefully I'll be referred by then.

    Thanks so much for your support, it really does mean a lot :)

  • Hi there, have sent you a PM. xx

  • Thank you! I'll pick it up now :)

  • I -- hopefully -- have sent you a p.m. on this . please let me know if you don't receive it ---- coz im a techno idiot and do have trouble at times sending .....alan x

  • Thanks! I've replied :)

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