Restarting NDT Following Brick Wall Appointment with Endocrinologist

[DanaScully]

Today I had my six month follow up with hospital Endocrinologist and I’ve been left feeling very deflated and disappointed. When I seen him six months ago, he agreed to start me on T3 (Liothyronine, 10mcg twice daily) with the agreement that if my symptoms didn’t improve, I could be referred to a specialist in Birmingham who could prescribe NDT. Six months on, I still have loads of symptoms yet my blood results are “in range”. Endo has now backtracked and has said the specialist referral would need to come from my GP (who doesn’t even know what NDT is) and that it would be private and I’d have to pay. He also thinks that because my thyroid results are “in range” (note: not “optimal”) that my symptoms must be down to something else.

My main symptom is constant fatigue; in particular I can’t get out of bed in the mornings despite a good night of constant sleep. A lull in energy in the afternoon is also constant. I also have:

*weakness/tremors (particularly in my hands) and can’t do anything such as open a bottle of jar.

*fluctuation between being cold and being hot, but most of the time I’m hot and have to have a fan on at work all day (my temperature is never any higher than 36.9).

*problems with what I can only describe as pressure in my head which affects my hearing. The only way I can describe it is similar to if you jump into water. Also have regular ringing in my ears and am very sensitive to noise. I’m researching this at the moment and have come across Ménière's Disease which apparently can also cause fatigue.

*dizziness/floaty feelings on occasion, possibly linked to the above.

*my nails are very brittle and snap/break quite a lot/dry hair and skin.

*depression/anxiety/suicidal thoughts.

*very low motivation – I no longer have a social life because I’m too tired to make the effort to do anything.

I have managed to have the Endo include tests for Hashimotos on next bloods, however he reckons I probably do have it and that a positive result doesn’t change anything anyway. I asked him to also add FT3 and FT4 and he agreed, however has only written ‘T3 and T4’ on the form. I was originally taking Thyroid-S which my doctor told me off for as I was apparently making myself hyper, hence the referral to Endo. Having now hit this brick wall, I’m going to self medicate and go back onto NDT but am not sure of how to manage it – I think I may have increased too much in the past which is why I tested hyper. I do know that the symptoms above were greatly improved when I was on the NDT.

Aside from my moaning above, I have a couple of questions for those of you who are UK based and take NDT. Please PM me if you can answer any of these questions to abide by forum rules.

*Which NDT brand do you take?

*How did you go about getting it? (i.e. purchase online, via an FMD etc). Specific websites would be really helpful.

*Does your (NHS) doctor offer blood tests to help you manage your dose? With that – how do you inform them of optimal dose on NDT as opposed to their understood ranges on synthetic.

*How did you find your optimal dose – when did you know when to stop increasing?

*Does anyone know whether it’s possible to buy Naturethroid over the counter in Thailand, and if so, what the cost is?

I would really appreciate any wisdom or advice on this. Health professionals don’t seem to look too kindly on patients who do their own research, but it's certainly not going to stop me.

[DanaScully]

I've just noticed the tags on this post. I assume they are auto suggested as they're not relevant to my post and I didn't select them manually. I don't seem to be able to remove them.

[greygoose]

They come up automatically. I don't think anyone takes much notice of them.

When you say you 'went hyper' (over-medicated), what exactly does that mean? Do you have your labs from that time? What hyper symptoms did you get? The details like that are so very important to people who might want to help you.

[DanaScully in reply to greygoose]

I was disappointed when GP told me I was hyper as it was the first time I had felt relieved of my symptoms for ages. She mentioned pooling and wanted me to stop the NDT pending referral to aforementioned Endo.

I don't have my labs to hand at the moment. GP surgery seem to think there's no need for me to have them! I will pop in tomorrow after work and ask for them and report back if they agree to print them.

Thanks.

Edit - sorry, forgot to say, I didn't feel like I had any hyper symptoms at all. I just felt 'normal' and like I used to pre-diagnosis. She basically frightened me into stopping the NDT and I did, but I realise now I just need to know how to interpret the results myself and know what is optimal.

[greygoose in reply to DanaScully]

It is your legal right to have a copy of your results under the Data Protection Act. They cannot refuse.

I expect your doctor was just looking at your TSH, which would obviously be low, as you were taking T3, and thought you were over medicated. They really have no idea what they're doing.

[DanaScully in reply to greygoose]

Thanks, I called the surgery yesterday and I'm picking up a copy later this afternoon.

I think she was definitely just looking at TSH. I won't be frightened into stopping this time even though my results might not match their usual expectations for someone on T4 only.

[Clutter]

DanaScully,

NatureThroid is an American brand so won't be available OTC in Thailand but it is available online.

If your GP is unable to order TSH, FT4 and FT3 you can order them as finger prick home tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

NHS doesn't usually test total T3 and total T4 so the T3 and T3 your endo has ordered are very probably FT3 and FT4.

Tags are automatically added. You can click on the v down arrow underneath your post, select edit and should be able to delete the tags by hovering over them and clicking on the x on the right hand side.

[DanaScully in reply to Clutter]

Thank you, Clutter. I wasn't aware that the NHS doesn't usually test TT3 and TT4, so that's reassuring to know.

[shaws Administrator]

It may be the only way you can recover your health. Levo wasn't for me. I tried several NDTs and one suited best but, for the present, I am on T3 only and doctors do NOT understand the difference a thyroid hormone which suits can change everything. Pains gone, body calmed completely, no symptoms and I think everyone deserves the very best, i.e. what suits them, and some of us are more unwell on levothyroxine than before being diagnosed. I was and my TSH was 100 as I was undiagnosed despite frequent visits to GPs, paid privately, had procedure under anaesthetic for something I didn't have until a first aider suggested 'thyroid' he was the only one apparently who could see my thyroid gland was swollen.

It would appear that thyroid hormone conditions are the 'cinderella' of the medical professionals.

I shall look for a link which will help.

[Hoxo]

By overmedicated I wonder if your Doctor was relying soley on TSH test and your TSH was low or suppressed - which does not mean you are over medicated at all. It's not that simple unfortunately. To check for good hormone ranges when on ndt you would need to check free t3 which doctors and labs won't test for anymore. So it's up to us to monitor ourselves which is not easy as symptoms can be caused by other issues. Have you had B12 checked? Some of your symptoms could be down to low B12 or low ferritin/ vit D.

In answer to your other questions I self medicate with ndt- just changed from armour to nature thyroid due to armour cost increase. I buy from USA. I can usually tell if I've over medicated as heart rate increases and I get headaches behind my eyes. My TSH has been suppressed for years and this has nothing to do with how much thyroxine I was on at the time- it was suppressed when free T4 was 9 and also when 26. ( normal range 10-24). It was due to antibodies and the disease process - I have Graves that was treated with subtotal thyroidectomy. Doctors don't seem to have a clue about thyroid disease. Some of us who don't respond to Levothyroxine alone have to educate ourselves and treat ourselves to have any hope of normal health. Btw I also self inject B12 now as found out I have had low B12 which was low but in normal range and GP wouldn't treat it. B12 injections have have hugely improved a lot of my stubborn symptoms.

[DanaScully in reply to Hoxo]

Thanks, Hoxo.

I think that is definitely the case here. I've had various blood tests recently and will be picking a copy up tonight after work. I'll post a link to these when I have them.

See this thread for some results you mentioned in your post, although the receptionist didn't give me the ranges (I'll get these later). healthunlocked.com/thyroidu...

[shaws Administrator]

This is a paper and take your time reading it - we have to read and learn if we wish to recover our health, despite the guidelines laid down by the Endocrinology. It stands to reason something is far wrong when there are so many on this forum, making the same statements 'I am not better' and doctor/endocrinologists refuse to help and ignore symptoms.

There's no quick fix as our thyroid gland has been gradually failing, or due to its removal etc. So slow and gradual is best, taking account of our temp/pulse etc - info on following paper.

You can either take Natural Dessicated Thyroid Hormones, and there are a few and sometimes you might have to try more than one. They contain all of the hormones a healthy gland would produce, T4,T3,T2, T1 and calciton (which helps our bones).

Or you can take T3 added to levothyroxine, or T3 only.

web.archive.org/web/2010112...

[DanaScully in reply to shaws]

Thanks, shaws. I'm at work at the moment but will definitely read the paper when I get some spare time.

[TupennyRush]

Hi there

I got a private prescription for ndt following a private appointment with an endo based on me having the di02 gene snp.

After the NHS endo 'signed off' on me having ndt my NHS GP now gives me a private prescription for ndt.

A friend who was on NHS prescribed ndt for 14 years was told last year she can no longer get it on the NHS. She now gets a private prescription.

I take Naturethroid. I get it from a pharmacy recommended by thyroid UK.

My GP does bloods for me but the original titration was by the private endo. My GP always orders ft3, ft4 and tsh. I know if I'm over medicated as I go a bit manic, or more manic than usual

Hope that helps

[DanaScully in reply to TupennyRush]

It certainly does help, thank you for your reply.