Hi all I'm new. I have been without levo for 6 weeks, this was decided by my endo since I had continuing hypothyroid symptoms on 150mcg. I was diagnosed 5 years ago.
Just wondering what next to do?
Thanks
Dec 2017
TSH 5.2 (0.2 - 4.2)
Free T4 14.7 (12 - 22)
Free T3 3.3 (3.1 - 6.8)
Thyroglobulin antibodies 229 (<115)
Thyroid peroxidase antibodies 778.5 (<34)
And what reason did he give? And how long is he going to withold a lifesaving medication?
If you can be referred to a different Endo do so NOW!
He said since symptoms aren't improving to take me off it
Your endo is a sadist. He has no right to conduct such an "experiment" on you. Were you test results whilst you were on levo? Your TSH was far too high for someone on levo.
We all are individual and we need whatever dose it requires to get our TSH to 1 or less. You are positive for antibodies so should try gluten free diet. Your vitamins are likely to be very low.
Have you had any tests for blood levels of: iron, ferritin, folate, Vit B12, Vit D. If you can afford to pay, Medichecks do private finger prick blood tests and they have offers on a Thursday, results back within a week.
Yes results were when I was on levo. No dose increase given. Had vitamins and minerals tested and they don't look good despite supplementing
Please post your results and tell us what dosage you are taking. I take 5000 IU of D3 + vit K and 5000 IU of methylcobalamin for B12. I don't supplement at this level all the time but I do have to keep taking supplements in order to stay well. We each have to find what level we need.
Taking you off treatment altogether when you are suffering hypo symptoms and high antibodies — indicating Hashimoto’s autoimmune disease (90% of Hypothyroids have Hashimoto’s) — makes no sense at all. What was the Endo thinking would happen? And what is the Endo’s next plan of treatment?
Please write a formal complaint describing everything that has happened. And see your GP as a matter of urgency. Hypothyroid patients once diagnosed and with hormone prescribed, can’t be dediagnosed. We don’t withhold insulin from diabetics claiming that they aren’t diabetic, and hypothyroid patients are no different.
Another endo who is undoubtedly a diabetes specialist and knows virtually nothing about treating Hypothyroidism and probably says antibodies aren't important!
I hope your GP is better informed. Personally I would now make an immediate appointment with your GP, tell him what has happened, say that you understand that when diagnosed hypothyroid then you need replacement thyroid hormone for life because you can't make enough yourself and that you intend to put yourself back on it. Hopefully you still have some. After 6 weeks you may not be able to go back on the same dose so maybe restart at 50mcg and gradually build it back up.
Dump your endo and if you really feel you want to see one then email Dionne at tukadmin@thyroiduk for the list of thyroid friendly endos, then ask on the forum for feedback on any that you can get to. Your GP should be capable of looking after you though.
Now you need to learn about Hashi's so that you can help yourself. Hashi's is confirmed by raised antibodies. The antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results (this is what most doctors don't understand). You can help reduce the antibodies by adopting a strict gluten free diet and supplementing with selenium L-selenomethionine 200mcg daily. Keeping TSH suppressed can also help reduce antibodies.
chriskresser.com/the-gluten...
hypothyroidmom.com/hashimot...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
Just to add to SeasideSusie's excellent response...
When you contact Dionne, give her the name of your current endo and have him put on the bad endo's list.
Is there one? Bet it's way longer than the good list!
Apparently there is such a list. As far as I know it isn't sent out to anyone, and the following is just my impression of how things work, so I could be wrong.
If someone asks TUK about doctor X or endocrinologist Y then they consult the good list and the bad list and report back which list they appear on (if any).
There certainly should be one!
What is happening with endo's these days? why are so many acting like sadists?
Maybe they have always been like that, except now we find out about them on forums like this?
I think there are a couple of things at the root of it. Lack of money is one. If doctors can get patients off thyroid meds and un-diagnose them with thyroid problems then they can save significant amounts of money if they do it to enough patients.
The other, I think, is that the government, the NHS, and psychiatrists have been training doctors and nurses for several years to believe that enormous numbers of conditions aren't physically real, they exist only in the heads of the patients. I posted about it roughly a year ago :
healthcareconferencesuk.co....
No doubt there are other reasons for the endo sadists. I think that the 19th and early 20th century diagnosis of hysteria never went away, the doctors just kept on changing its name. I think its popularity has fluctuated too. But now, the government has spent about £1 billion over the last few years on a project called IAPT - Improving Access To Psychological Therapies - and the idea that people are hysterical and neurotic and mentally ill roars on catching more victims.
england.nhs.uk/mental-healt...
england.nhs.uk/mental-healt...
Scary analysis HumanBean!
In the NHS this seems linked to atrocious, long term underfunding. Everyone knows they don't have the resources to properly treat patients, so they train new doctors to think not treating them is the right thing to do 
I agree!
That's absolutely outrageous and his bullying behaviour should be reported.
As others have said, Levothyroxine is for life. Some people can become dangerously ill if Levo is stopped
Presumably you have some Levothyroxine you could take? If so start back on 50mcg and get new GP to retest after 6 weeks. Increase in 25mcg steps until TSH is around one and FT4 towards top of range
What dose were you on and what results before endo stopped your medication?
You are now obviously extremely under medicated
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
Your endocrinologist should know this, must be yet another useless Diabetes specialist
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Your vitamins are low BECAUSE you are under medicated
Follow SeasideSusie ecellent vitamin supplement advice
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
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)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask new GP for coeliac blood test first
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
thyroidpharmacist.com/artic...
Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance
gluten.org/resources/health...
Thousands on here have found gluten free diet helps
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
tukadmin@thyroiduk.org
Also ask her for the recommended thyroid specialists list
Professor Toft recent article saying, T3 may be necessary for many
rcpe.ac.uk/sites/default/fi...
With Hashimoto's we must get vitamins optimal FIRST. Get Levo increased to bring TSH down to around one and FT4 towards top of range
Very likely strictly gluten free helps or is essential
If after all these steps FT3 remains low then, like many of us with Hashimoto's, you might benefit from small dose of T3 adding
Was on 150mcg before, results
TSH 1.25 (0.2 - 4.2)
FT4 19.2 (12 - 22)
FT3 4.0 (3.1 - 6.8)
Is this on the same dose as your December results?
You don't mention what your symptoms are like now. Do you feel terribly sick?
Yes
Symptoms are tiredness, constipation, joint pain, feeling cold, weight gain
I feel very unwell
This is a terrible situation Your doctor has no idea what they're doing and is just pulling ideas out of the air.
I hope some of the advice above is useful, just getting away from this doctor is a good first step!
trying for a baby
Gluten Free for almost 7 weeks
Latest 6 monthly thyroid test and autoimmune thyroid disease 
