Hi -I’m wondering if any of you lovely people have any advice for me trying to go forward with what I can only describe as a stubborn Doctor.
Around 6 months ago I was experiencing dizzy spells - i soon realised this only happened when I took my 100mg of thyroxine (medication I had been on for 20 years) I reduced the dose to 25 mg with reduced dizziness but intense headache. I reduced to 25mg every 4 day which I can only just tolerate if taking on a night time..as you can imagine without any meds I was starting to feel very Ill… I had gone from attending the gym 3 - 4 times per week to becoming extremely weak and had to cancel my membership. My GP wouldn’t accept that I was no longer tolerate in thyroxine. medication. I made a private appointment to see my endocrinologist - it’s been a long 6 months but finally my endo prescribed t3 and I do feel some what better - however not a 100% … but trying to get my GP to agree to look into the dizziness and migraine proving very difficult. My GP is also refusing to continue to prescribe T3 - saying I need to see an NHS Endocrinologist as T3 will give me heart disease.. I have sent my GP lots of info from Thyroid uk eg Nice guidelines - Lord Ministor Kamal on T3 stating GP’s in the UK can now start to prescribe this as the cost has been reduced and also letters of recommendation from my private Endocrinologist. My doctor has told me he get his information from a pharmacist - who he explains is highly qualified… he has explained to my doctor I need to be seen by a NHS endo before my doctor can prescribe T3. I honestly cannot get a proper conversation out of my doctor as he constantly buts in to any thing I say and is clearly getting very stressed out by our conversations of T3 prescribing - then accuses me of butting in when he is talking - I’m trying to be very patient with him. He is unaware that I have started taking T3 meds as far as he is concerned I am only taking a small amount of thyroxine every 4 days… My problem is I only have a 6 month prescription for T3 from my private Endo my point is how can he leave me like this - I work full time but if didn’t have this medication I would of had to of given up work. At one point I couldn’t walk up a small hill but as soon as I started to take T3 was able to do accomplish more physical tasks( previously id been running once per week 3 miles and attended high energy exercise at the gym. Sorry for the long rant but I guess what I’m asking is when I go to see the NHS Endo what can I say to him .. my previous experience of NHS endo’s has been similar to my experience with this doctor - any advice would be greatly received. I was thinking of going to write to my MP but I’m just unsure what to do and feel like I’m running out of time … I do have the option of getting a repeat prescription from my private Endo - however he is often out of the country for long periods of time I’m sure he is due to retire soon - I also want to move 250 miles away so getting to see him would be an ordeal in the future. Thanks for taking the time to read.
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Mandica
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Around 6 months ago I was experiencing dizzy spells - i soon realised this only happened when I took my 100mg of thyroxine (medication I had been on for 20 years) I reduced the dose to 25 mg
That was a massive dose reduction and you may actually have needed dose increase in levothyroxine or low vitamin levels correcting
What were your thyroid and vitamin results when on just 100mcg levothyroxine
Did you always get same brand levothyroxine at each prescription
Next step is to get FULL thyroid and vitamin testing done after 6-8 weeks on constant unchanging dose and brand
How much levothyroxine are you taking
How much T3
What vitamin supplements are you taking
Do you have autoimmune thyroid disease also called Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Thank you for taking the time to reply Slow Dragon and sending all those useful links - I already get my blood work done from medichecks (full well woman) and my vitamin levels are in range if not in the top range. In relation to taking thyroxine I honestly couldn’t continue taking that amount as I certainly wouldn’t be working today. Even now I take 1mg of liquid lethothyroxine at night and dread it as wake up with migraine. It’s crazie because if I don’t take it I feel poorly it’s just seems to be listening to my body to take it at right time which is around every four days.
I do think I will have to source T3 privately - my issue is I still do not feel right - I can hold down my job but I’m still not able to do the exercise I used to. I’ve never suffered this bad with headaches before my sinuses and ears just seem to be blocked with a sore throat. At one point, I even thought my throat looks swollen like a goiter.. could this explained all the above problems. I guess I will have to take all of these problems with me to the NHS Endocrinologist as I think my doctor has given up listening to me I’m sure he thinks I’m a hypochondriac. I just wish UK understood thyroid issues better. I was also thinking of privet health care insurance - has anyone tried this…
Thank you again to everyone for your response and wonderful support 😊
I was also thinking of privet health care insurance - has anyone tried this
Health insurance won’t usually cover pre existing conditions
You sound like you’re under medicated….it can be extremely difficult to increase levothyroxine when very hypothyroid…..body so desperate for thyroid hormones you can get masses over very odd symptoms
Liothyronine should only be initiated by an NHS consultant endocrinologist when being prescribed for the treatment of hypothyroidism.
Patients who are currently obtaining supplies by private prescription or self-funding should be aware of the Guidance for NHS patients who wish to pay for additional private treatment. Patients who have been seen privately can be referred back to the private service for private prescription if this is appropriate.
Before changing from 100mcg levothyroxine you should have had full thyroid and vitamin levels tested
Approximately how much do you weigh in kilo
Guidelines on dose levothyroxine by weight when on ONLY levothyroxine is Approx 1.6mcg levothyroxine per kilo per day
Essential to test vitamin levels at least annually and maintain optimal vitamin levels for levothyroxine or T3 to work well
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
it may be that self sourcing T3 is your only option. Many of us here do just that. It just gets to the point where you can’t face another appointment with an inept and prejudiced doctor.
T3 will not ‘give’ you heart disease, or osteoporosis or anything else. All it will give you is the quality of life you deserve.
SlowDragon has given some excellent advice regarding ‘next steps’.
Good luck on your thyroid journey 😉
My NHS endo actually said to me “getting T3 from your GP is too political, get it from this website” and actually showed me where to buy it.
In your reply - Especially as you didn’t try increasing levothyroxine and all vitamins at optimal levels first before adding T3 - I assume this directed at OP?
Personally, I had been hypothyroid for 18+ years before I arrived at HU, was on T4 monotherapy for 9 of those, optimising vitamins & many restrictive diets for 5 of those 9 and only added T3 in the last 3. Finally, after addressing my adrenal insufficiency, I am metabolizing my T4 and T3.
I raised my T4 and optimized my vitamins, to no avail, many moons ago before HU was but a twinkle in my eye! 🙂✨ I’ve only been on this forum for a year, but been ill for nearly 20.
I don’t want to give too many descriptors on him as he deserves to be protected! But he himself is not English so I have a feeling he is looking on our current situation from a perspective similar to ours thinking “god this is bonkers, but my hands are tied.” He was v pragmatic about it, even said “Tiromel is very cheap, go for that one” and scrolled to it - it was already up on his screen! He didn’t even type in the webpage in front of me… I hope he’d also been showing other patients before/after me.
I believe private prescriptions can be given by GP at Roseway labs if you have blood tests showing a need for Lio. As I haven’t done this myself perhaps someone who has can confirm.
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