Latest results on NDT

[saffy1ruby]

Hello, I wonder if anyone can help me with my results please.

My bloods were taken over a month ago, only TSH was tested which came back

TSH 3.03. (0.35 - 5.5)

No other thyroid bloods taken until i insisted after thyroid neck scan showed 8mm nodule continuing to grow on one side of thyroid and a new one of 5mm on other side. No further discussion with GP on this. Bloods taken on 17.9.2019 are

TSH 2.09. (0.35-5.5)

T4. 10. (9.0-23.0)

T3. 4.7. (3.5-6.5)

Ferritin 87.9. (30-400.0)

Folate 11.4. (3.3-99999.0)

B12. 559. (190-910)

No vit D taken and no antibodies taken, although i had requested them. 2 years ago my TPO antibodies 455. (00-59)

I am taking NDT 1 grain now, finding it hard to raise dose, i am ill every couple weeks, neck swells, joint pain, fatigue etc. I constantly feel as if a band is around my neck and its sometimes hard to swallow when when neck swells. I would really appreciate some advice on where to go next, do I carry on trying to raise NDT, or introduce some T3, which I have sourced, or go T3 alone, am confused as to what to do next. I am also gluten free which has helped a lot. Thank you

[greygoose]

You're very under-medicated to have a TSH over three. But, it's impossible to tell you what you should try next without the appropriate labs, I'm afraid. But, you could try raising your ferritin and folate, they're a bit on the low side. That might make raising NDT easier.

You don't need your antibodies retested. Once you've had a result over-range, you have Hashi's, and it doesn't go away.

[MaisieGray in reply to greygoose]

greygoose The OP's newest test results from two days ago are listed:

TSH 2.09. (0.35-5.5)

T4. 10. (9.0-23.0)

T3. 4.7. (3.5-6.5)

[greygoose in reply to MaisieGray]

Oh, sorry! Got them the wrong way round! I thought the TSH only was the latest.

[saffy1ruby in reply to greygoose]

Thank you so much for the reply, will try to raise my ferritin and folate, do you think it is Hashi’s that is causing these repeated flare ups of illness and is it worth sticking with just NDT on its own? Also does Hashi’s contribute to thyroid nodules and is there anything I can do to slow their growth?

[greygoose in reply to saffy1ruby]

It could be the Hashi's - levels do tend to jump around.

And, Hashi's can contribute to nodules. But, to be honest, just about everyone has nodules, whether they have a thyroid problem of not. And they rarely cause any problems. They don't grow very much, or very fast. So, I really wouldn't worry about them.

As to what you should take, have you ever tried levo only? Or levo + T3? NDT doesn't suit every one - and some Hashi's people really don't do well on it. How long have you been on it?

[saffy1ruby in reply to greygoose]

Thanks again for reply, sorry its so late. I started it 2 years ago at a quarter grain but had such anxiety and heart racing that it took a while to try and raise it and couldn’t seem to get past half grain. Then i stopped it until this year as i had a bereavement and just couldn’t seem to pull myself together. Was so ill for a while, but restarted in spring this year, went gluten free again, have managed to get to 1 grain but get very edgy and anxious when raising, have stuck at 1 grain for a couple of months now. Never really sure what to do but realise I need to sort out vitamin levels etc to get good results. Do Hashi sufferers ever take just T3 or is it usually NDT or levo. Have been refused trial of levo by gp but could source some if its a good idea. Am going to try a private appt at clinic in Leeds in a couple of months as my Gp is so hostile to any mention of thyroid while TSH is in range. Do you think its a good idea to see a private doc or should i just carry on with NDT and keep checking bloods. Although I feel gradually better in tiny stages its a real setback when I am ill so often and would love to feel more healthy. Sorry to ask so many questions and thanks again.

[greygoose in reply to saffy1ruby]

No problem asking questions, I just don't know if I can answer them.

Hashi's people, like most other hypos, are usually started on levo, and have to fight to get anything else. But, sometimes NDT can make Hashi's people worse. So, could be a trial of levo + T3 might be better for you.

I really don't know about private doctors, they often no better than NHS - the all have the same training. It's a bit of a gamble, to be honest. No guarantee you'll get better treatment because a private doctor is just as likely to be ignorant as an NHS one.

[saffy1ruby in reply to greygoose]

I really appreciate your replies, i have learned so much from you all on this site and dread to think what I would have been like without it. I will carry on trying to bring all vitamin and iron levels up, its such a scary thing when you are so ill and left to get on with it, so this site is a lifeline, thanks

[greygoose in reply to saffy1ruby]

You're welcome.

[Wetsuiter in reply to saffy1ruby]

you could try moving to another NHS GP in the 1st instance?

Do you have any results from when you werent taking anything?

[saffy1ruby in reply to Wetsuiter]

Thanks for your reply, the results i have for before i was taking anything were 2 years ago

2017

TSH. 2.2. (0.35-5.5)

T4. 11. (9-23)

T3. 4.2. (3.5-6.5)

TPO

antibodies 455. (00-59)

Ferritin. 14.6. (30-400)

Folate. 8.1. (3.3-99999)

B12. 338. (190-910)

Vit D. 88.8. (>50)

My mum and her sister and their mum all had thyroid issues but i did not know much about it and my poor mum was not diagnosed until she was in her 50s like me, she suffered constant ill health, was never properly treated and we lost her over 3 years ago. It was my dad who pushed me to ask for help when i started to experience the same symptoms. I trusted the GP to help me but have learned so much from this site and had no help from gp.

Thanks

[Batty1 in reply to saffy1ruby]

Armour is better if you split the pill and take it twice a day, I had to do this while I was on it for a year. I've since been switched to synthyroid and cytomel (88mg /10mg) and I still split my 88mg synthyroid in half and take them at 2 different times with 5mg cytomel. I get less symptoms this way.

[saffy1ruby in reply to Batty1]

Thank for reply, I have sourced naturethoid NDT, tiromel and liothyronine, but so far have only tried NDT, do you think I should add a little of T3. I get so confused and worried about what to do next so I really appreciate all the good advice.

[Batty1 in reply to saffy1ruby]

If your taking NDT I personally would not add t3 to it since your having issues with it. Try splitting the pill and taking it at different times (I take my doses 6 hours apart)and do that for a couple weeks and see how it goes. Do you retest thyroid levels 6-8weeks after you start new meds?

[saffy1ruby in reply to Batty1]

Ok will do that thankyou, Am going to start retesting 6-8 weeks through medichecks, now that brain fog lifting I feel able to try and get on top of things, thanks for advice.

[McPammy]

If your Endocrinologist is not helping with the swelling in your neck. Could you see an ENT ( ear, nose and throat) Dr. I’m saying this as my sister suffered similarly. Her Endo wouldn’t help her. She changed hospital and went to see an ENT Dr who did a fine needle aspiration who then found thyroid cancer. This was after her NHS Endocrinologist saying she had no Endocrine issues!! She had her thyroid removed within 2 weeks. It’s just a thought. Her antibodies were sky high at over 1000.

[Batty1 in reply to McPammy]

That's really bad. I hope your sister is doing much better and filed a complaint against Endo and who follows her care now that she had thyroid cancer...I hope not ENT.

[McPammy in reply to Batty1]

Yes it’s been ENT not an Endo for 6 years. I only found this out this year. She has seen an Endocrinologist for the first time this year!!! No she wouldn’t complain. Not like me. I’d go mad.

She’s very timid.

[saffy1ruby in reply to McPammy]

Oh wow that is a shocking story, funnily enough I saw an ENT a few weeks away, have had chronic sinusitis since 2006 but couldn’t get referred till now, have read that this can be a side effect of thyroid problems. He prescribed steroid nasal drops and an allergy test, i didn’t mention thyroid nodules as I didn’t know I had another one at that time. Am so pleased to hear your sister was diagnosed and hopefully well now, thank you so much for your reply.

[saffy1ruby in reply to saffy1ruby]

Sorry I forgot to say I have never seen an endo, my gp refused to refer me and instead rang him and they agreed by telephone that i could not have trial of levo or be seen by him!!

[McPammy in reply to saffy1ruby]

That’s terrible. If you are not happy with the treatment you are or are not getting from the NHS, if you mention PALS they soon become more amenable and will listen and act.

PALS is the NHS complaints body. Even if you don’t intend to complain officially if you suggest you may I bet things will change in your favour.

[saffy1ruby in reply to McPammy]

Thanks McPammy, I might do that, when I can pluck up the courage🤞 I am really fed up with gp, but am learning so much from this site that I feel stronger every day.

[Poniesrfun]

I posted this on my thyroid cancer forum but you might find it helpful

This video by Dr. Julie Ann Sosa of University of California SF is directed to (probably) surgical residents or fellows but there is very little you'll find over your head in her clear illustrations and discussion. I would suggest anyone newly diagnosed (or not diagnosed) watch this video. It is a good reminder that you are the most important person on the team with final say on what treatment you want to pursue.

youtube.com/watch?v=_uzjzqS...(Not working as expected?)

It is also available from her profile link at profiles.ucsf.edu/julieann.....

The video is 52 minutes - make time, get a snack and a comfy chair.

I would take a shot at the private endo.

Patti in AZ

[saffy1ruby in reply to Poniesrfun]

This is fascinating Poniesrfun, have been changing my mind every 5 minutes about what to do for the best. I saw a private dr in 2017 who wrote to my gp telling her which bloods to take and start a trial of levo but she refused. The dr I have found in Leeds is a functional dr and I am going to try and get there in next few weeks. Thank you