Totally debilitated and needing constructive advice please

[Crazybirdlady]

Hi, I'm new to the group and basically desperate to talk to others about my issue but PLEASE *No ACCUSATORY or negative comments thank you* Long story short, I have several nasty autoimmune diseases which includes endometriosis which I've had for 30 yrs. Diagnosed with multi nodular goitre, hashis and hypo 3 yrs ago along with a string of other illnesses and vitamin & mineral deficiencies. I was slowly and steadily withering away on levo; existing and not living. My 20 Yr long relationship ended and I had to resign from my job as a specialist advisor with CAB as I couldn't function. My eldest child also has endometriosis (my worst nightmare come true) and my 9 year old son has Tourettes syndrome and Dystonia so life was already challenging but manageable before my diagnosis. I got very sick, pneumonia and pleurisy 3 years every January then I couldn't get better. I was being tested for everything including a life shortening lung disease (negative thank god) but diagnosed with all the other stuff listed above. Levo was more hindrance than help and I was sleeping 18 out of the 24 hrs, my home has gone to pot as I can't keep up with housework with feeling so ill, I'm not taking care of myself and unable to care for anyone else so I educated myself and sourced ndt and t3 and introduced them slowly (began t3 a few months after ndt as ndt alone wasn't working well) whilst stopping levo altogether. Couldn't tell GP as he dismissed all convos regarding these drugs saying he "didnt believe in them as the doses in each tablet were not correct". I really Was feeling 90% better on both meds& Many symptoms disappeared. I was beginning to lose weight as an added bonus I was 16st 8lb and as I'm only 5ft 4inches I should be around 10st. I was truly elated at the reduction in symptoms. Then after routine Blood results just came back, thyrotoxicosis was confirmed 2 weeks ago, t3=9.6 (it was 3.3 pre meds and tsh too low (result to follow). G.P asked me if I'd been taking anything else, I said no (as I knew he doesn't prescribe or support use of them and I was so worried he'd get angry with me and strike me off). He's now referred me to an endocrinologist for 11th july. Had to now revert back to levo and stop ndt and t3 but symptoms are back with a vengeance. Can't function, majorly symptomatic so I'm back to square one and I'm now practically housebound. I'm awake every night with pain and feeling ill, sleeping through the day, weight has rocketed within 2 weeks I've gained back 10lbs (not ate differently). I want to go back on ndt at least because I'm a miserable and pained recluse now who feels she has no choice but to take levo. I'm absolutely devastated this has happened as I wanted this to work so much for me and my family. I can't look after my son or home like this. How can I get onto ndt and t3 with a Dr or consultants consent and be monitored by them (dosage checks, blood tests etc)? I really need help and support with this please. Running the risk of sounding morbid but I truly feel like I'm slowly dying. My MENTAL and physical health are suffering terribly and I feel alone in this. I can't smile anymore and all I do is cry. I CAN'T stay on levo, I just CAN'T COPE. What can I do to get back on these meds in the right way? I want my life back 😢

[Angie_Phalange]

Just wanted to say that I’m sorry you are having such a hellish time. I only have hashimotos to deal with and planning to get off Levothyroxine as I can’t tolerate it and want my life back too. There are lots of great people on this forum and I’m sure you will get some good advice.

[Judithdalston]

Well you have come to the right forum Crazybirdlady, sadly many forum members have been, or are, in a similar position... wondering whether to stick to endo/gps instructions / prescriptions to get medical support, but feeling rubbish, or effectively DIY relying on the forum and private blood tests etc to feel better. I am in the latter camp after 12 years of inadequate treatment and disabilitating diagnosis of fibromyalgia, I added T3 I get privately from Turkey, to NHS levothyroxin. Even if you find a sympathetic Gp they can't do full thyroid tests measuring the FT3, nor prescribe T3, and fewer endocrinologists seem to be helping as CCGs are blocking prescriptions. Any idea whether the endo you are referred to July 12th is a thyroid specialist and not a diabetic one? If after this visit you feel totally repressed I personally suggest the solution of not lying to your Gp, treating your symptoms, is to private test and treat...being aware not to let you FT3 get too high.

[SlowDragon Administrator]

The average Diabetes endocrinologist is not likely to get you anywhere

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request the list of recommended thyroid specialists. Some are T3 friendly or also NDT

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

What dose of Levothyroxine are you now on? How long since stopped NDT/T3?

Likely to have low vitamin levels, when were these last tested?

Ask GP to test or get private tests- ideally 8 weeks after being on constant dose

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 or NDT don't take in 12 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

Are you on strictly gluten free diet? If not you are really going to need to try it

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Lulu_65]

Crazybirdlady

I'm at work so can't say much. You sound like me 18 months ago. Since starting t 3 in November 2016 I have gone from strength to strength But (and its an important but) it's vital that you have your t3 checked regularly so you know you've got the doseage right. It took me over a year of regular blood tests and diseage tweaking before I was just right. Maybe that's where your answer is. I only have one nhs test a year as I monitor mine through blue horizon

Just a thought

Lulu

[SlowDragon Administrator in reply to Lulu_65]

Similarly I only get private blood tests and just give my GP copy of one once a year

[Gambit62]

Sorry that you are suffering - I had an awful time when I was put on levo - dose was much too low and GP wouldn't talk about it - I've slowly upped the dose over time - and things now seem to be more or less where they should be - amazing that doctors just sign repeat prescriptions without really looking at how frequently they are being requested.

The problem with things like NDT is that it is very difficult to know exactly how much is in them - easier with something that is chemically produced like levo - so you can't be exactly sure how much you are getting. Not sure what the variation is with NDT but do know that it is considerable with some natural supplements - such as kelp taken for iodine.

Have you thought about checking for problems converting T4 to T3?