Help please, very ill don't know what to do.

[Fionna]

Hi everyone,

I last posted back in 2012 I think as was not feeling well after thyroid removed in 2011 and was on 100 levo although gp, consultant said I was fine and was depressed.

Saw another consultant again your fine but I told her when I missed a days dose I felt better at the end of that day. No head pressure but obviously still other symptoms, neck pain, fatigue, hair loss, stomach spams, heartburn, blurry eyesight and the list goes on.

Consultant ant advised to stop taking for a week, whick I did and boy when I tried to take levo again, I ended up in hospital, servere nausea 24/7 agitation basically pacing the wards 24/7, no eating sleeping, no one knew what to do. Endoscopy revealed gastritis, esophelgistis and histis hernia ( never had problem before thyroid removed)

Since then I have seen the late Dr Skinner and tried armour this helped only a little but my body is not tolerating any meds and basically they not working either.

I have now been bedbound for 2 years even had levo injections got blood work normal but still very poorly. Since March last year I have been on 100 mch pure levo, Tsh shot up to 29 and since then I managed to get it down to Tsh 12 which was on the 21st novermber. I have just had blood test done and they have now told me to stop taking it for 5 days as my TSH is 00.0 something and T4 is 34 which they said is double what it should be. ( this also happened twice while I was on injections)

I am so scared my body is so underactive and poorly it seems like it is just poisoning me and has just built up in my body.

I have servere chest pain, horrible night sweats which is only on chest back of neck, flacky scabby skin, upper eyelids always puffy, joint pain, hissing in my head which I always wake with at 4am, head all over the place, dry wretching, nausea, swelling under chin which goes up and down, hands/fingers are all wrinkley .

I just don't know what to do. I have finished a course of high vit d3 in December as that was low and I am supplementing with iron and folate.

Any help appreciated

Fionna

[Hennerton]

I would guess that you are not converting T4 to T3. This would account for the very low TSH and high T4. Have they ever tested your free T3? This would be the first thing to do. Then, depending on the result, I would think you would be better on T3 only, which will give your ailing hypo body just what it needs, without having to convert the T4. As a matter of urgency ask for the T3 blood test and then post your result here with the reference range for more advice.

[Fionna in reply to Hennerton]

My blood test on 21st November was TSH 12.1 mu/l FT4 13.9pmol/l FT3 3.0pmol/l and the consultant was going to get some pure thyroxine in 25s to add one a day but obviously forgot so when I went to gp in tears as cannot go on being so Poorly she reluctantly did a blood test last Friday and banged on again about anti depressants and on Tuesday this week a different consultant rang me to stop taking levo as t4 was high until Monday when another blood test is to be done to see what dose to take.

Fionna

[Clutter]

Fionna, I'm surprised that your consultants haven't tried Levothyroxine (T4) plus Liothyronine (T3) combination or T3 only. I was recovering on T3 after thyroidectomy but became very unwell when I was switched to T4 after RAI until I was 90% bedridden. I cleared the build up of T4 by stopping it for 12 weeks, taking T3 only, but in desperation stopped all thyroid meds for 4 weeks as I still felt very ill. I felt very well within days and within 2 weeks all the dreadful symptoms had cleared. Weeks 3 and 4 were dreadful and with hindsight I needn't have stayed off meds so long. Within a day of resuming T4 the palpitations, breathlessness and tremors started again. I took 20mcg T3 with it next day and everything calmed down and I'm recovering well on T4+T3 combnation. The T3 seems to calm the adverse effects I experienced on T4 only.

[shaws]

Fiona, I am sorry you are so unwell and nothing seems to be working for you.

Some people are very intolerant of levothyroxine. I wonder if your Consultant will prescribe for you a trial of Nature Throid which is a hypoallergenic natural dessicated thyroid hormone. I know they aren't keen on doing so as so many false statements have been made about NDT. That was the first thyroid hormone replacement and was in use in several forms since 1892 without any problems as far as I know. They BTA state, falsely, that the T4 and T3 are inconsisten but Nature Throid or WP Thyroid (by the same company) has never been inconsistent in these two hormones for75 years. It is levothyroxine which is inconsistent and has been recalled and some withdrawn over the years. Nature-throid and WP thyroid are 'sisters' but WP has less ingredients.

getrealthyroid.com/why-get-...

getrealthyroid.com/

thyroiduk.org.uk/tuk/treatm...

The following link gives details of how the doctor/consultant should prescribe. I believe Boots or Lloyds Pharmacy can provide or any chemist.

A member who is getting either of those prescribed will tell you which chemist. If you have a private prescription you can ask any of the companies in the list.

I hope you begin to feel better shortly.

[Fionna]

Thank you all for the advice.... I did try 100 levo and 20 T3 when I saw the second consultant while I was still working but became poorly hair went so dry as well... In hindsight I think the combination was too high considering she had only reduced the t4 by 75mcg over the week as I was originally taking 125 and 100 levo alternate days and my kidneys were killing me so I stopped the t3. Unfortunately I didn't get all the results on the phone as was no with it.

My blood test on 21st November was TSH 12.1 mu/l FT4 13.9pmol/l FT3 3.0pmol/l and the consultant was going to get some pure thyroxine in 25s to add one a day but obviously forgot so when I went to gp in tears as cannot go on being so Poorly she reluctantly did a blood test last Friday and banged on again about anti depressants and on Tuesday this week a different consultant rang me to stop taking levo as t4 was high until Monday when another blood test is to be done to see what dose to take.

Fionna

[Clutter in reply to Fionna]

Fionna, High FT4 with low FT3 means you aren't converting well. You need some T3 added to your T4. You can start with 5mcg or 10mcg and build up over a few weeks although you'll need a pillcutter to cut down 20mcg unless you are prescribed Paddocks 5mcg T3.

[Hidden]

Excellent advice already provided. Just to add - with your body being battered like this your Adrenals may have become exhausted. You don't mention whether you've been supplementing with Vit B12? If not, that might help. Also I understand Vit C helps with absorption of meds.

Wishing you better health real soon.

[Fionna]

Thank you all for your advice... Well I have a blood test 2morrow and then apparently on 75mcg T4 but depends what blood test says. Gp dosent want to get involved and it's impossible to get hold of consultant although he is only going on blood tests as my regular consultant is on holiday and he knows my past history, so I can't get any T3 or discuss my situation with anyone.

Wish me luck 2day is 5th off Levo although had a bad night, I feel a bit better today, so god knows what I will be like after taking the levo 2morrow.

Fionna

[faith63]

You do not convert your t4 to t3 well. I think you would be a good candidate for t3 only. But, you would most likely have to self medicate and buy it yourself.

[dylandolly]

Hi Fionna,I really feel for you,as for the last6 month or so I have been feeling nauseated and feeling sick and since November have been being sick,I have had zero appetite its been awful,I like you, waken at 4 in the morning and thats the start of me being sick,add to that a migraine headache to go along with it,its horrible,but for the last 4 days I have felt better,I got my levo upped 4 weeks ago again, to 150mg,I was on 100,then 125, and I think thats kicking in,also stopped all pain medication for headaches,which were actually giving me rebound headaches,and those tablets must have really been irritating my gastritis because within 2 days I felt so much better,so if you are on any pain meds or and meds that might irritate your stomach,if you can stop them for a few days and see if that helps,and also make sure you have enough thyroid meds going into your system,your having more problems than I had Fionna and I really wish you well,hope your health improves really soon xx

[Fionna in reply to dylandolly]

Thank you Dyland dolly

I really wish I never had my thyroid out and my mistake thought if I had problems they would b sympathetic and would keep trying to sort me out, but how wrong was i. It's just a constant battle.

Wishing u well

Fionna